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# Histiocytosis Association

## Sitemaps

- [XML Sitemap](https://histio.j2test.com/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Meet the Team: Staff Highlight Series with Kristen, Our Chief Program and Development Officer](https://histio.j2test.com/meet-the-team-staff-highlight-series-with-kristen-our-chief-program-and-development-officer/)
- [Episode 92 - You Are Not Alone: Mental Health and Peer Support in Rare Disease.](https://histio.j2test.com/episode-92-you-are-not-alone-mental-health-and-peer-support-in-rare-disease/) - In this episode we're exploring the often-overlooked mental health impact of rare disease across every stage of the journey, from the uncertainty before diagnosis to treatment, remission, and beyond. Licensed social worker Doris Dahdouh joins us to discuss the emotional realities patients, caregivers, and siblings face, including anxiety, grief, guilt and isolation, while offering practical
- [Granted Part 2: Scoring](https://histio.j2test.com/granted-part-2-scoring/) - By Peter Yanefski, Communication and Operations Coordinator Sometimes, the best way to team up is to split up the work. And that's exactly how the Histiocyte Society(HS) and Histiocytosis Association scientific committees score the research grant proposals. Welcome back to our series, Granted, where we show that funding science isn't magic. If you missed part
- [Caring for the Caregivers: The Emotional Weight Loved Ones Carry in Histiocytosis](https://histio.j2test.com/caring-for-the-caregivers-the-emotional-weight-loved-ones-carry-in-histiocytosis/) - By Doris Dahdouh, MSW, LSW, INHC, LMSW As Mental Health Awareness Month comes to a close this May 2026, it feels important to pause and reflect not only on those living with Histiocytosis, but also on the caregivers and loved ones walking beside them through this journey. Caregiving is an integral part of life for
- [Episode 091 - AI in Rare Disease](https://histio.j2test.com/episode-091-ai-in-rare-disease/) - The latest episode of the Beyond the Diagnosis podcast is now available. Kathy sat down with Dr. Richard Godby to learn about how AI interacts rare disease. Learn about how AI is affecting the rare disease space both now and into the future.
- [Living With Histiocytosis: The Emotional Weight No One Sees](https://histio.j2test.com/living-with-histiocytosis-the-emotional-weight-no-one-sees/) - By Doris François Dahdouh, Peer Support Moderator. As we recognize Mental Health Awareness Month, I find myself thinking about how deeply emotions are woven into the human experience, especially within the Histiocytosis and rare disease community. Emotions are not weakness. They are part of what makes us human. We feel deeply because we are living
- [Granted: Part 1: Conflict of Interest](https://histio.j2test.com/granted-part-1-conflict-of-interest/) - By Peter Yanefski, Communication and Operations Coordinator This is the first in a series of posts we're going to share about the research grant process, called Granted. We'll take you behind the scenes to our process, to show that funding science, isn't magic. As part of my role, I assist our Secretariat, Kathy Wisniewski, with
- [Histio Community Spotlight - Kristin and Doug Aaron](https://histio.j2test.com/donor-spotlight-kristin-and-doug-aaron/) - Can you share your connection to histiocytosis and how you became involved with the Histiocytosis Association community? Our son Jenson was born with LCH which initially showed up as red petechiae all over his back. The pediatric dermatologist called me at work to let me know Jenson had “Histiocytosis.” She indicated she wasn’t an expert,
- [Ep 90 - A Monkey, A Mission, and a Legacy: Creating Grins One Monkey at a Time](https://histio.j2test.com/ep-90-a-monkey-a-mission-and-a-legacy-creating-grins-one-monkey-at-a-time/) - In this heartfelt episode, Kristin Aaron shares the inspiring story of her son Jensen, whose joyful spirit sparked the Monkey Grins initiative, bringing smiles to children battling histiocytosis and their siblings. Despite the challenges of Langerhans cell histiocytosis (LCH), Jensen's legacy of love and resilience continues to uplift families worldwide. Discover how advocacy, community support,
- [A Supporting Cast](https://histio.j2test.com/a-supporting-cast/) - By Barb Adams (Histio Parent) Can you imagine “Histiocytosis: The Musical?” The idea may not be as far-fetched as it seems. In 2018, “Hemophilia: The Musical” had a one-night run at a New York City theater. The project,featuring 25 teenaged hemophilia patients, was the community-building, loneliness-combattingbrainchild of a healthcare marketing agency and a pharmaceutical company.
- [Ep 089 – Supporting the Next Generation – The Histiocytosis Association’s Student Scholarship Program](https://histio.j2test.com/ep-089-supporting-the-next-generation-the-histiocytosis-associations-student-scholarship-program/) - In this episode of Beyond the Diagnosis, we sit down with 2024 Histio Student Scholarship recipient Brinda Shukla to hear her powerful journey from a Rosai-Dorfman Disease diagnosis at age 13 to pursuing a future in medicine. Brinda shares her personal story, what it was like to apply for and receive the scholarship, and how
- [Becoming Again- Finding Yourself in a New Season](https://histio.j2test.com/becoming-again-finding-yourself-in-a-new-season/) - By Doris Dahdouh MSW, LSW, INHC, LMSWPeer Support Moderator As March comes to an end and we begin to settle more fully into spring, I’ve found myself reflecting on this past winter. I wonder, what has winter felt like for so many of us? Has it been the same? Has it been different? Are we the same… yet
- [Bringing Histio to Hill and Table](https://histio.j2test.com/bringing-histio-to-hill-and-table/) - 2026 Rare Diseases Symposium: Bringing Histio to the TableBy Melinda Atnip - Program and Outreach Coordinator This year marked my third time attending the Rare Diseases Symposium, co-hosted by CHOC Research Institute (now part of Rady Children's Health) and University of California, Irvine at the Beckman Center of the National Academies of Sciences & Engineering.
- [Defined by Humanity](https://histio.j2test.com/defined-by-humanity/) - Reflections from the Raregivers Leadership Conference by Melinda Atnip and Allie McFadden Representing Our Community — and Ourselves As caregivers, care partners, and staff leaders at the Histiocytosis Association, we — Allie and Melinda — carry both mission and lived experience. In January, those two worlds met in a powerful way. We were invited to
- [Ep 88 - From Patient to Advocate - A Youth Voice for Rare Disease Week](https://histio.j2test.com/ep-88-from-patient-to-advocate-a-youth-voice-for-rare-disease-week/) - On the latest episode of Beyond the Diagnosis, we sit down with Nate — a Histiocytosis Youth Ambassador, high school sophomore, and passionate advocate — who went to Capitol Hill to participate in Rare Disease Week with the EveryLife Foundation for Rare Diseases. Diagnosed with Langerhans Cell Histiocytosis as a child and continuing to manage
- [There's a Rare There](https://histio.j2test.com/theres-a-rare-there/) - By Peter YanefskiCommunication and Operations Coordinator When diagnosed with a disease, with a cough or a sneeze,People can hear it, or see it on your sleeve. When diagnosed with something rare, when unknown or unseen, many don't care.Even though a burden is bidden, it's hard to share, when its hidden. If its hurting skin, people
- [Chasing a Vision](https://histio.j2test.com/chasing-a-vision/) - By Peter Yanefski, Communication and Operations Coordinator Lucas Blomberg was born with clouded vision, he had cataracts from birth. Two years later, his bigger battle began. In late 2018, when Lucas was 2, Amanda Blomberg saw a grapefruit-sized lump on her son Lucas’s neck. Lucas underwent 3 months of tests, and it was discovered that
- [Ep 87 - D1 overexpression in Erdheim Chester Disease w/Karen Rech](https://histio.j2test.com/ep-87-d1-overexpression-in-erdheim-chester-disease-w-karen-rech/) - In this episode Kathy welcomes Dr. Karen Rech from the Mayo Clinic to discuss her groundbreaking research on Erdheim-Chester Disease (ECD). The conversation delves into the challenges of diagnosing ECD, highlighting the significance of cyclin D1 overexpression as a potential marker. Dr. Rech explains how this discovery aids in distinguishing ECD from other histiocytic neoplasms
- [Living in Jeff's Legacy](https://histio.j2test.com/living-in-jeffs-legacy/) - By Peter Yanefski - Communication and Operations Coordinator When I first started at the Histiocytosis Association in 2022 I only really met with our founder Jeff Toughill by phone or video call in my first 3 months. Past that, we had very few solo interactions, and I saw him in person only a few times
- [Ep 86 - The 2025 HopeCast!](https://histio.j2test.com/ep-86-the-2025-hopecast/) - Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2025. Beyond the Diagnosis • A podcast on Spotify for Creators
- [When the Holidays Feel Heavy: Holding Space for Hardship This Season](https://histio.j2test.com/when-the-holidays-feel-heavy-holding-space-for-hardship-this-season/) - By Doris Dahdouh, MSW, LSW, LMSW INHC The holidays are often described as “the most wonderful time of the year.” And for many, they truly are—filled with lights, music, gatherings, and familiar traditions meant to bring warmth and joy. But for others, the season feels complicated. Tender. Overwhelming. Heavy. When you’re navigating a Histiocytosis diagnosis,
- [BTD ep 85 - A Season for Gratitude](https://histio.j2test.com/btd-ep-85-a-season-for-gratitude/) - It’s that time of year where all thoughts shift to gratitude and we wanted to take a moment to express our thankfulness to our histio community for all you do throughout the year! Join Kathy for this heartfelt message of thanksgiving and hope. https://anchor.fm/histio
- [Giving Tuesday: A Day of Generosity, Hope, and Community](https://histio.j2test.com/giving-tuesday-a-day-of-generosity-hope-and-community/) - Each year, the Tuesday after Thanksgiving marks a global celebration of generosity known asGiving Tuesday. What began as a simple idea, to inspire people to do good, has grown into amovement that spans over 80 countries, uniting people around the world in acts of compassionand kindness. For me, this day isn’t just a line on
- [Celebrating Breakthroughs - Recap of Histio at NORD Breakthrough Summit](https://histio.j2test.com/celebrating-breakthroughs-recap-of-histio-at-nord-breakthrough-summit/) - Last month, the Histiocytosis Association sent 3 people to the NORD Breakthrough Summit. Histio Ambassadors Tim and Hank, and the Executive Director Jen Silvers. Tim, Hank and Jen all share their experience below. Jen Silvers also attended TargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers in Boston, MA last month and she
- [Barbara Adams: Telling Her Story and Yours](https://histio.j2test.com/barbara-adams-telling-her-story-and-yours/) - When you train as a journalist, you don’t think the stories you’ll tell will be about yourself (well, except for the Newswriting 101 exercise where you have to pen your imaginary obituary, the only time I’ll ever be referred to as a Pulitzer Prize winner). Yet since my son, Brent, was diagnosed with Langerhans cell
- [Ep 84 - Meet the New Histiocyte Society President, Vasanta Nanduri](https://histio.j2test.com/ep-84-meet-the-new-histiocyte-society-president-vasanta-nanduri/) - In this episode we’re introducing you to the brand-new President of the Histiocyte Society, Dr. Vasanta Nanduri. We talk about how she got involved in medicine, her history with the Society and her vision for the future. If you like keeping up on all things histio, this is an episode not to be missed!
- [Ep 83 - Staff Highlight - Meet the New Executive Director, Jen Silvers](https://histio.j2test.com/ep-83-staff-highlight-meet-the-new-executive-director-jen-silvers/) - In this episode we’re introducing you to the Histiocytosis Association’s brand new Executive Director, Jen Silvers, as we continue on in our staff highlight series! Listen in as we learn about Jen’s hobbies, background and what led her to this role. You might find yourself surprised!
- [Dr. Hind Salama: Under the Microscope](https://histio.j2test.com/dr-hind-salama-under-the-microscope/) - Time in the Specialty: I have been in the field for the last 8 years and officially launched the clinic which is considered as the first clinic in Saudi Arabia dedicated to adult histiocytic disease last year. Mentor in the Field: My mentor was Dr. Ronald Go. I was communicating with him and Dr. Guarav
- [EP 82 - Continuing Medical Education and the Patient Voice](https://histio.j2test.com/ep-82-continuing-medical-education-and-the-patient-voice/) - In this episode, we’re exploring the personal journeys of patients and families navigating the complex world of HLH and delving into the transformative power of collaboration between organizations dedicated to advancing physician education on rare diseases. Tune in to learn how as the patient voice is brought into the conversation, these collaborative efforts are shaping
- [What Does It Really Mean to Be Well?](https://histio.j2test.com/what-does-it-really-mean-to-be-well/) - By Doris Dahdouh, MSW, LSW, INHC | Histiocytosis Peer Moderator August has been officially designated as National Wellness Month. Did anyone else know that? I’ll admit it—I didn’t! I only learned this fact about a week ago, and as a Wellness Advocate, I couldn’t let it pass without sharing it—especially with the histio community. Like
- [Doctors Under the Microscope: Astrid van Halteren](https://histio.j2test.com/doctors-under-the-microscope-astrid-van-halteren/) - Time in the Specialty: I am not a MD, but a staff member (PhD) performing research on histiocytic disorders. However, I am involved in establishing a histiocytosis diagnosis and in my lab we do mutational monitoring of histiocytosis patients on request. I have been actively involved in histiocytosis research since March 2008. To date, I
- [Designing Your Own Awareness Poster - From the Desk of Communications](https://histio.j2test.com/designing-your-own-awareness-poster-from-the-desk-of-communications/) - By Peter Yanefski - Strategic Communications Associate This year, the Association is encouraging people to design their own awareness posters for Histiocytosis Awareness Month in September. We have opened up a contest to the whole community for a chance for your poster to be featured among our awareness kit materials! I wanted to get people
- [Episode 081 - Meet the Team: Behind the Scenes with Kathy, the Histiocyte Society Secretariat and More!](https://histio.j2test.com/episode-081-meet-the-team-behind-the-scenes-with-kathy-the-histiocyte-society-secretariat-and-more/) - In this conversation, we turn the spotlight on the voice behind Beyond the Diagnosis. With nearly 17 years at the Histiocytosis Association, Kathy Wisniewski discusses her multifaceted role, including managing the research grant program, planning the Histiocyte Society annual meeting, and her passion for podcasting. Fueled by her own experience with rare disease, Kathy emphasizes
- [Grounded in the Chaos: Navigating Summer with Histiocytosis](https://histio.j2test.com/grounded-in-the-chaos-navigating-summer-with-histiocytosis/) - By Doris Dahdouh, MSW, LSW, INHC | Histiocytosis Peer Moderator Structure. It’s not a word most people get excited about, but deep down, many of us know how much we need it. Structure keeps us focused and helps us stay on top of things. It organizes our thoughts, our days, and our to-do lists. It
- [Episode 80 - Histio Patient and Family Summit - Your Guide to this Exciting Event](https://histio.j2test.com/episode-80-histio-patient-and-family-summit/) - In this conversation, we are discussing the upcoming Histio Patient and Family Summit, highlighting its significance in fostering education, connection, and support within the histiocytosis community. Join us as we explore the inspiration behind the summit, the importance of partnerships between patients and clinicians, and the various activities planned for the event, including interactive learning
- [The 33rd Annual Nikolas Symposium: A Pathway to a Cure ](https://histio.j2test.com/the-33rd-annual-nikolas-symposium-a-pathway-to-a-cure/) - At the age of 4 months, Nikolas Kontoyannis was diagnosed with histiocytosis-x (now known as Langerhans cell histiocytosis or LCH). Nikolas’ journey was very uncertain and faced many challenges, including central nervous system involvement which still impacts Nikolas today. His journey is the source of inspiration for continued research and an annual Symposium held in
- [Under the Microscope: Dr. Scott Canna](https://histio.j2test.com/under-the-microscope-dr-scott-canna/) - Dr. Scott Canna is a pediatric oncologist at the Children's Hospital of Philadelphia. He also just finished researching "Defining and Testing the Hyperinflammatory Immune Synapse" which was partially funded by a seed grant from the Association in 2022. The paper for which can be found here. Time in the Specialty: Immunologically, I “cut my teeth”
- [Creating your own logo for an event](https://histio.j2test.com/creating-your-own-logo-for-an-event/) - By Peter Yanefski, Strategic Communications Associate Are you hosting a D-I-Y fundraiser this summer as part of Summer FUNdraising? If so you will need a catchy name and logo. While a name for the event is more personal and depends on the situation, there are a few key tips I can give you for creating
- [Mental Health Awareness & Rare Disease Questions](https://histio.j2test.com/mental-health-awareness-rare-disease-questions/) - Answered by Doris Dahdouh, Licensed Social Worker and Integrative Nutrition Health Coach In honor of Mental Health Awareness Month this May, I sat down with the Executive Director, Deanna Fournier, of the Histiocytosis Association to answer some heartfelt and important questions from the Histio community. What made this Q&A so special is that these questions
- [Episode 079: Approach to the Patient: From Endocrinopathy to the Diagnosis of a Histiocytic Disorder](https://histio.j2test.com/episode-079-approach-to-the-patient-from-endocrinopathy-to-the-diagnosis-of-a-histiocytic-disorder/) - Drawing from a recent webinar, Drs. Polyzois Makris and Gaurav Goyal join us to explore their research and the critical role endocrinologists play in recognizing symptoms early, guiding diagnosis, and supporting long-term monitoring. Offering helpful takeaways for healthcare providers and patients and families alike, their real-world insight into improving care for those affected by histiocytic
- [How to Prioritize Self-Care When Your Loved One’s Diagnosis Gets Overwhelming](https://histio.j2test.com/how-to-prioritize-self-care-when-your-loved-ones-diagnosis-gets-overwhelming/) - This is the caregiver and family/friend guide to self-care, you can find the self-care as a patient guide here. “Self-care is not a waste of time. Self-care makes your use of time more sustainable.”—Jackie Viramontez By Doris Dahdouh, MSW, LSW, INHC How can you think about anything else? You just heard that your loved one—someone
- [Why Have We Endured the Elements these Past 16 Years?](https://histio.j2test.com/why-have-we-endured-the-elements-these-past-16-years/) - Today we wanted to hear from our Board of Trustees Chairwoman, Tracy Brown, about the Histio Hike Shenandoah, one of the longest running volunteer-led events we have (16 years strong!). Tracy hosts the event on behalf of her son, and now all the Histio warriors she's gotten to know over the years. Tracy goes through
- [Under the Microscope: Dr. Oussama Abla](https://histio.j2test.com/under-the-microscope-dr-oussama-abla/) - Dr. Oussama Abla is the director of the Pediatric Histiocytosis Program at Toronto's Hospital for Sick Children (SICK KIDS). He is also on the Association's Medical and Scientific Committee. Getting into the histiocytosis field: I got interested in treating children with LCH when I saw a child in 2006 with LCH and a history of
- [How to Prioritize Self-Care When Your Diagnosis Gets Overwhelming](https://histio.j2test.com/how-to-prioritize-self-care-when-your-diagnosis-gets-overwhelming/) - This week, we have a comforting post guest written by an old friend of mine, Doris Dahdouh about self-care through a diagnosis, and will be back soon to share about self care, for caregivers. Doris brings a diverse background in social work, health coaching, and community engagement. She holds a Master’s in Social Work from
- [Episode 078 - From Misdiagnosis to Mission – One Patient’s Journey with Rare Disease](https://histio.j2test.com/episode-078-from-misdiagnosis-to-mission-one-patients-journey-with-rare-disease/) - In this episode, Ambassador Hank Heren shares his courageous journey from being misdiagnosed, to finding his purpose in life to help others affected by histiocytosis in the most practical of ways.
- [Reaching out to your local community](https://histio.j2test.com/reaching-out-to-your-local-community/) - This past Monday I attended my first Greater Pitman Chamber of Commerce Meeting. Deanna loved attending them when she was more local, and now that I am the most local person, I have taken up that role and am embracing the overlap between my existing Pitman community and representing the histio community. The Greater Pitman
- [4 Stories of Advocating for Rare in DC](https://histio.j2test.com/4-stories-of-advocating-for-rare-in-dc/) - At the end of February, through the cold, and amidst all the change happening in Washington D.C., several members of our histio community ventured out to participate in Rare Disease Week activities. Today we will be highlighting four of our ambassadors who each had their own interactions with congressional and senate representatives for their states
- [Episode 077 – MEK Inhibitors in ECD –MEK Inhibitors in ECD](https://histio.j2test.com/episode-077-mek-inhibitors-in-ecd-mek-inhibitors-in-ecd/) - In this episode, we’re chatting with Drs. Goyal, Abeykoon, and Acosta-Medina about their study on MEK inhibitors and what it means for patients. Plus, we’ll dive into how genetic mutations can affect patient responses and why ongoing research and collaboration are key to improving outcomes. https://anchor.fm/histio
- [From the Desk of Communications Coming Soon](https://histio.j2test.com/from-the-desk-of-communications-coming-soon/) - Hey histio community! This is the Strategic Commnications Associate, Peter Yanefski, here. I just wanted to briefly pop into the blog to talk as myself and announce that more of the same is to come. In addition to being in charge of most of the wide communications we share from the Association, I also am
- [Episode 076 – Meet the Team: Staff Highlight Series with Erica, Our Database Guru](https://histio.j2test.com/episode-076-meet-the-team-staff-highlight-series-with-erica-our-database-guru/) - In this episode we’re bringing you the third in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association. On this episode we’ll meet Erica, our Database Coordinator. Join us as Erica shares her journey to the Association, the challenges and intricacies of her
- [Developing & Updating Clinical Guidelines for Histiocytosis](https://histio.j2test.com/developing-updating-clinical-guidelines-for-histiocytosis/) - On January 16th, 2025, I attended an Annual Meeting for the National Comprehensive Cancer Network (NCCN)’s Histiocytic Neoplasms Panel. The physicians on the panel, from across leading cancer centers in the United States, have direct and regular experience treating histiocytosis. I sit on the panel as a Patient Advocate, to represent the patient voice as
- [2025 and Beyond: Our Hope for the Next Chapter](https://histio.j2test.com/2025-and-beyond-our-hope-for-the-next-chapter/) - As we at the Association bear through this cold January and get our footing in this new year, we're looking back on 2024 and using our successes and opportunities for growth to define where we are heading next. If you'd like to hear about our 2024, you can check out the HopeCast video on our
- [Episode 075 – The 2024 Hopecast Part 3 – Research](https://histio.j2test.com/episode-075-the-2024-hopecast-part-3-research/) - In this episode we dive into part 3 of the 2024 HopeCast replay, originally broadcast live on Giving Tuesday in December 2024. This episode is focused on the third and final pillar of Research and the progress we’re making towards finding better treatments and a cure! .
- [Episode 074 – The 2024 Hopecast Part 2 – Support](https://histio.j2test.com/episode-074-the-2024-hopecast-part-2-support/) - In this episode we share part 2 of a replay of the 2024 HopeCast, originally broadcast live on Giving Tuesday in December 2024. This episode is focused on the second pillar of Support and how it provides hope for patients and families.
- [BTD Episode 073 - 2024 Hopecast - Awareness](https://histio.j2test.com/btd-episode-073-2024-hopecast-awareness/) - Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2024. Filled with stories, accomplishments and a look ahead, this is an episode that is sure to provide much hope for the future.
- [Social Security Benefits for Children with Histiocytosis](https://histio.j2test.com/social-security-benefits-for-children-with-histiocytosis/) - In a blog post in October, we featured the abridged conversation between me and two Social Security experts Sandra Lamb and Jane Johnson, from the recent Beyond the Diagnosis podcast episode 69 about SSDI and Compassionate Allowance for those with Histiocytosis to use when applying for disability. If you missed it, you can read it
- [Episode 072 - Recap of 40th Annual Meeting](https://histio.j2test.com/btd-episode-072-recap-of-40th-annual-meeting/) - In this episode we’re learning about the most recent Histiocyte Society Annual Meeting right from the horse’s mouth! Join us as Histiocyte Society President, Dr. Kim Nichols, shares all of the highlights from this most unique and exciting meeting!
- [Growing From the Pain: Lessons on Post-Traumatic Growth](https://histio.j2test.com/growing-from-the-pain-lessons-on-post-traumatic-growth/) - Today I want to share about a topic that isn’t discussed nearly as much as it’s negative counterpart. I want to talk about Post-Traumatic Growth. Post-Traumatic Growth is a mental reaction, not discounting the trauma one may encounter, but occur alongside the negative biological reactions to trauma. The best way that I can explain post
- [Episode 071 - Meet the Team: Behind the Scenes with Danielle, Our Financial Extraordinaire](https://histio.j2test.com/episode-071-meet-the-team-behind-the-scenes-with-danielle-our-financial-extraordinaire/) - In this episode we’re bringing you the second in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association. On this episode we’ll meet Danielle, our Chief Financial Officer. Join us as Danielle shares her journey to the Association, the challenges and rewards of
- [Navigating SSI and SSDI Applications for Histio Disorders](https://histio.j2test.com/navigating-ssi-and-ssdi-applications-for-histio-disorders/) - Hi everyone! We hope you enjoyed all of the information we shared during Awareness Month!Recently, we shared that compassionate allowances for SSDI benefit enrollment were expanded for those with histiocytic disorders. Shortly after, we sat down with Sandra Lamb and Jane Johnson, two experienced disability representatives, about how this makes the process easier, and for
- [Ep 70 - Navigating Social Security & Disability Benefits for Children: Compassionate Allowance Expansion for Histiocytosis.](https://histio.j2test.com/ep-70-navigating-social-security-disability-benefits-for-children-compassionate-allowance-expansion-for-histiocytosis/) - In this episode, Deanna Fournier guest hosts and interviews Sandra Lamb and Jane Johnson, two experienced disability representatives, about navigating the Social Security Administration (SSA) for individuals with histiocytic disorders. Part 2 of a 2-part series, this episode focuses specifically on children with questions directly from our histio community. They explain the eligibility criteria for
- [Episode 069 - Navigating Social Security & Disability Benefits for Adults: Compassionate Allowance Expansion for Histiocytosis](https://histio.j2test.com/episode-069-navigating-social-security-disability-benefits-for-adults-compassionate-allowance-expansion-for-histiocytosis/) - In this episode, Deanna Fournier guest hosts interviews with Sandra Lamb and Jane Johnson, two experienced disability representatives, about navigating the Social Security Administration (SSA) for individuals with histiocytic disorders, specifically adults. They discuss the recent expansion of the compassionate allowances list, eligibility criteria for applying for Social Security benefits, and the role of disability
- [068 - Meet the Team: Behind the Scenes with Peter, Our Strategic Communications Maestro](https://histio.j2test.com/068-meet-the-team-behind-the-scenes-with-peter-our-strategic-communications-maestro/) - In this episode we’re excited to kick off our new series, “Meet the Team,” where we introduce you to the dedicated individuals working behind the scenes. Our first guest is Peter Yanefski, our Strategic Communications Associate, who plays a vital role in shaping the voice and outreach of our organization. Join us as Peter shares
- [The INTO-HLH Registry and its Progress](https://histio.j2test.com/the-into-hlh-registry-and-its-progress/) - This week, we are pleased to have team from the INTO-HLH Registry as guests, to speak about the registry, its purpose, and its progress. The INTO-HLH RegistryThe Insight into the Natural History and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis (INTO-HLH) registry is a collaborative effort with Cincinnati Children’s Hospital Medical Center (CCHMC), Texas Children’s Hospital, and
- [Best - so far - of 2024 from the Association](https://histio.j2test.com/best-so-far-of-2024-from-the-association/) - We're about halfway through the year, and although we have a lot more to share with you this year, we wanted to take a quick pit-stop and do a quick recap of some educational videos and resources we've added in 2024. This won't be a typical blog post, it will mostly just be embedded video
- [Episode 067 - Fostering the Next Generation: Young Investigator Initiatives Within the Histiocyte Society](https://histio.j2test.com/episode-067-fostering-the-next-generation-young-investigator-initiatives-within-the-histiocyte-society/) - In this episode we’re diving into the innovative Young Investigator initiatives within the Histiocyte Society, spotlighting the newly formed Young Investigator and Social Media committees. We explore their goals and strategies, highlighting how these efforts are cultivating the next generation of leaders and researchers in the world of histiocytosis
- [UAB Survivorship Study and its impact so far](https://histio.j2test.com/uab-survivorship-study-and-its-impact-so-far/) - The following blog post is adapted from the April University of Alabama at Birmingham (UAB) newsletter for the Histiocytosis Survivorship Study participants. We figured many of you, who haven't been a part of this, would be interested in our partnership with UAB. You can currently join the study if you are English-Speaking (anywhere in the
- [Malignant Histiocytosis - Ultra rare disease among rare diseases](https://histio.j2test.com/malignant-histiocytosis-ultra-rare-disease-among-rare-diseases/) - In March, we focused on Malignant Histiocytosis (MH), to learn more about this rarer form of histio. First, we sat down with Dr. Karen Rech and Dr. Aishu Ravindran to talk about the Pathology of Malignant Histiocytosis (MH); we then spoke with Dr. Gaurav Goyal and Dr. Gordan Ruan about the Clinical aspects of MH.
- [Episode 066 - Working Through Grief - Together](https://histio.j2test.com/episode-066-working-through-grief-together/) - In this episode Kathy dives into the complex emotions surrounding grief in patients and families dealing with histiocytosis. We’ll talk about the different types of grief, the stages of healing, and the importance of dedicated grief supportgroups. Join us for an enlightening and inspiring conversation about finding strength and community amidst the challenges of histiocytosis.
- [32nd Annual Nikolas Symposium (Greek Histiocytosis Meeting)](https://histio.j2test.com/32nd-annual-nikolas-symposium/) - In mid-May, I had the opportunity to once again attend the 32nd Annual Nikolas Symposium hosted by the Kontoyannis family and the Artemis Foundation (Histio Hellas) in Greece. The Nikolas Symposium was established in 1989 as a scientific think-tank focused on histiocytosis; it welcomes scientists, researchers and medical professionals from all over the world to
- [Episode 065- AVP-Deficiency Explained Understanding and Managing a Rare Condition](https://histio.j2test.com/episode-065-avp-deficiency-explained-understanding-and-managing-a-rare-condition/) - In this episode Kathy talks with Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience for those living with Arginine Vasopressin Deficiency, formerly known as Diabetes Insipidus.
- [Patient Centered - Rare Disease Led](https://histio.j2test.com/patient-centered-rare-disease-led/) - The Patient Centered Outcomes Research Institute (PCORI)’s federally mandated Rare Disease Advisory Panel (RDAP) has been an incredible opportunity. For the last three (3) years I have served on the panel, and for the last year as Co-Chair. It is inspiring to see how much the PCORI staff truly appreciates and desires to hear the
- [Episode 064 Voices of Dedication-Honoring Our Histio Volunteers](https://histio.j2test.com/episode-064-voices-of-dedication-honoring-our-histio-volunteers/) - In honor of Volunteer Appreciation Month, join us for a special episode dedicated to celebrating the incredible contributions of our devoted volunteers and Ambassadors. Kathy sits down with two of our Ambassadors who generously share their volunteer journey and the impactful initiatives they're championing in their commitment to the histiocytosis cause. Get inspired by their
- [Episode 063 - Heartbeats of Hope: The Histio Caregiver](https://histio.j2test.com/episode-063-heartbeats-of-hope-the-histio-caregiver/) - In this episode we hear about the caregiver experience from Histio Ambassador and mom to a histio warrior, Barb Adams. She shares an honest and encouraging perspective which will leave you with hope and encouragement for your own histio journey.
- [Our Experience from the 3rd Annual CHOC/UCI Health Rare Disease Symposium Family Conference](https://histio.j2test.com/our-experience-from-the-3rd-annual-choc-uci-health-rare-disease-symposium-family-conference/) - Melinda Atnip, our dedicated Outreach Program Coordinator and Southern California resident, recently attended CHOC and UCI’s 3rd Annual Rare Disease Symposium and Family Conference. The LIVE event on March 7th, complemented by virtual sessions on the 6th and 8th, served as a dynamic platform for diverse medical, research, and academic professionals to convene. This symposium
- [Pediatric to Adult: Our Focus on Transitions](https://histio.j2test.com/pediatric-to-adult-our-focus-on-transitions/) - 15 years ago, investigators around the world were still searching for effective therapies for histiocytic disorders. We were beginning to learn about the genetic mutations that are present with histio. We were uncovering that most histiocytic disorders are neoplastic and can be classified as a form of rare cancer. These discoveries and advancements opened up many
- [Rareness Creating Awareness - Rare Disease Day 2024 Recap](https://histio.j2test.com/rareness-creating-awareness-rare-disease-day-2024-recap/) - This Rare Disease Day was the rarest of all. It was on one that fell on a Leap Day. Given this occasion, we went all out for Rare Disease Day this year. We shared our stripes through NORD’s template for Rare Disease Day, which sparked dozens of Facebook posts and Instagram stories from people tagging
- [BTD Episode 062 - From Adversity to Opportunity](https://histio.j2test.com/btd-episode-062-from-adversity-to-opportunity/) - In this episode Kathy is joined by Deanna Fournier and Sydney Martin, 2 histio warriors diagnosed as children, to learn about their inspirational stories of turning their adversity into opportunities and the ripple effect that this can have on others facing their own challenging circumstances.
- [Setting A Course for the Future - The Histiocytic Disorders Workshop](https://histio.j2test.com/setting-a-course-for-the-future-the-histiocytic-disorders-workshop/) - On February 1st and 2nd of this year, approximately 70 healthcare providers and patient advocates came together at St. Jude Children's Hospital to brainstorm solutions to gaps and challenges for histiocytosis research. The Histiocytic Disorders Workshop (HDW) was spearheaded by leaders of the field: Carlos Rodriguez-Galindo, MD, Carl Allen, MD, and Eli Diamond, MD through
- [2023 Histiocytosis Association Research Grant Recipients](https://histio.j2test.com/2023-histiocytosis-association-research-grant-recipients/) - Since 1992, because of your generosity and dedication, the Histiocytosis Association has granted over $7.5 million for research projects in 14 countries - that's 211 projects, 7 clinical trials and 1 international database. This year, the Histiocytosis Association awarded 4 new seed grants. Here to dive into the Histiocytosis Research Grant Program is Kathy Wisniewski,
- [The Start of an Exciting Year - A Peek Forward](https://histio.j2test.com/the-start-of-an-exciting-year-a-peek-forward/) - Last blog post, we reflected on 2023 – a year with many accomplishments in the histiocytosis research and community outreach areas. We are so grateful for YOU and all you have made possible! As we rounded into this new year, we identified very specific areas of our mission that we wanted to put extra emphasis
- [Episode 061 – Part 3 of 3 – The Fruits of Our Labor: Joining Together to Fund Research  ](https://histio.j2test.com/episode-061-part-3-of-3-the-fruits-of-our-labor-joining-together-to-fund-research/) - In Episode 061 of the Beyond the Diagnosis Podcast. Deanna Fournier joins us again, this time with Claudio DiGirolamo, President and Director of the Histiocytosis Association of Canada, to talk about coming together to fund research and the power of international collaboration.
- [Wrapping up a Wonderful Year – A Look Back](https://histio.j2test.com/wrapping-up-a-wonderful-year-a-look-back/) - Histio Warrior, Ambassador, and dear friend, Ana, shared an exercise during our peer support groups in December that really resonated with me. It was a mind-mapping exercise for reflection on the year and looking forward into the future. I sometimes struggle to set a personal intention at the start of the new year, however, I
- [Episode 060 - Navigating Histiocytosis from a Neuropsychological Perspective w/ Dr. Lana Harder](https://histio.j2test.com/episode-060-navigating-histiocytosis-from-a-neuropsychological-perspective-w-dr-lana-harder/) - In Episode 060 of the Beyond the Diagnosis Podcast we're having a great conversation with a pediatric neuropsychologist that you don’t want to miss!
- [Episode 059 - HopeCast 2023](https://histio.j2test.com/episode-059-hopecast-2023/) - Come along with us in this episode as we share a replay of our HopeCast, originally broadcast on Giving Tuesday. Learn all about the accomplishments of 2023 and what’s in store for 2024.
- [Episode 058 - Global Genes Conference: Showing Up and Making an Impact](https://histio.j2test.com/episode-058-global-genes-conference-showing-up-and-making-an-impact/) - Welcome to Episode 058 of the Beyond the Diagnosis Podcast. Join us as we talk with 3 Histio Ambassadors, Melinda Atnip, Ana Valdez and Nate Milam, about their experiences at the recent Global Genes conference and how their mutual goal is to show up, share their voice and make an impact.
- [From Greece, with Research: 39th Annual Histiocyte Society Meeting](https://histio.j2test.com/from-greece-with-research-39th-annual-histiocyte-society-meeting/) - Every year, the Histiocyte Society, a partner organization of ours, meets in a new location to share research and celebrate the achievements many researchers have made throughout the year in histiocytosis research. This year the meeting was held in Athens, as it is every 5 years, per a partnership with the Histio Hellas organization. I
- [Global Growth in Histiocytosis Patient Advocacy and Research](https://histio.j2test.com/global-growth-in-histiocytosis-patient-advocacy-and-research/) - Me and a few members of our staff returned from the 39th Annual Histiocyte Society Meeting in Athens, Greece a few weeks ago and now that we’ve unpacked our suitcases and the meeting, we’re ready to share our takeaways with you. Later this month, we will talk with Kathy Wisniewski, the Secretariat between us and
- [Website Content Reviewer](https://histio.j2test.com/website-content-reviewer/) - Number of Volunteers Desired for Position: Multiple Position Overview: The Website Content Volunteer will be responsible for periodically looking through the Histiocytosis Association website, checking for misspellings throughout, checking all of the links on the site and notifying the appropriate Association staff person if a link directs the user to an invalid site. Please note
- [Rare Disease Advisory Panel - PCORI Fall Meetings](https://histio.j2test.com/rare-disease-advisory-panel-pcori-fall-meetings/) - The Patient Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. They state their mission as “We fund comparative clinical effectiveness research (CER), which compares two or more medical treatments, services, or health practices to help patients
- [A Peak Through the Clouds: NORD Breakthrough Summit](https://histio.j2test.com/a-peak-through-the-clouds-nord-breakthrough-summit/) - I was so excited to attend the NORD Breakthrough Summit, where patient advocacy professionals, pharmaceutical companies, biotech, FDA, and other key stakeholders in rare disease come together to learn and connect with one another. As a NORD member, the Histiocytosis Association knows how wonderful the National Organization for Rare Disorders is – they provide education,
- [Histio Letter Writing Campaign: A Remarkable Success!](https://histio.j2test.com/histio-letter-writing-campaign-a-remarkable-success/) - Welcome back to the blog! After a month off while we took more time to bring awareness to histio, we are back and ready to tell you all about what we accomplished in awareness month and what's next. Starting off October, we have a guest writer on, our very own Melinda Atnip, Outreach Coordinator and
- [Beyond the Diagnosis - Episode 56 - Standing Up to ECD with Courage and Hope w/ Barry Atnip](https://histio.j2test.com/beyond-the-diagnosis-episode-56-standing-up-to-ecd-with-courage-and-hope-w-barry-atnip/) - Welcome to Episode 056 of the Beyond the Diagnosis Podcast. Listen in as Barry shares his courageous journey living with Erdheim-Chester Disease (ECD) and the hope he found through family, friends, and his medical team.
- [Episode 55 -Advocacy and Awareness 2 Pillars of Finding a Cure](https://histio.j2test.com/episode-55/) - As we get ready to head into Histiocytosis Awareness Month join us as we talk with 2 Histio Ambassadors, Drew Freedman and Nate Milam, about the importance of advocacy and awareness in the quest to find a cure.
- [Histio and MSK - Involved and Supportive](https://histio.j2test.com/histio-and-msk-involved-and-supportive/) - As a patient advocacy organization, the Histiocytosis Association is no stranger to working closely with hospitals or medical organizations within the US and around the world. In fact, we work with as many as we can. There are some over the years that we’ve collaborated with time and time again. One of those is the
- [Access to Therapy Around the World](https://histio.j2test.com/access-to-therapy-around-the-world/) - As you know, the Histiocytosis Association has a multifaceted mission and under that umbrella, oversees many different activities all aimed at providing support, resources, and advocacy along every step of the histiocytosis journey. One of the areas of our work involves providing information about the latest treatment options for each histiocytic disorder. Patients, families, and
- [Episode 53 - Surviving and Thriving – Going Truly Beyond the Diagnosis w/ Dr. Gaurav Goyal](https://histio.j2test.com/episode-53-surviving-and-thriving-going-truly-beyond-the-diagnosis-w-dr-gaurav-goyal/)
- [Home run and a Hole in One for a Cure](https://histio.j2test.com/home-run-and-a-hole-in-one-for-a-cure/) - Back in June, we had two events that both centered around supporting HLH and both involving sports. The first, 'Play for a Cure', is a 25-Year-Old event and the second is the HLH Awareness Golf Outing, which is in its second year. Play for a Cure was started by Christie Shipley, mother of three HLH
- [Episode 048 – Cultivating the Seeds of Research: Understanding the Scoring Process w/ Caroline Hutter](https://histio.j2test.com/episode-048-cultivating-the-seeds-of-research-understanding-the-scoring-process-w-caroline-hutter/) - In this episode Kathy dives into part 2 of 3 about our research grant program. Today we’ll talk about how grant applications are scored and how the Histiocyte Society’s Scientific Committee makes their recommendations to the HA’s Board.
- [A Guide to Genetic Testing](https://histio.j2test.com/a-guide-to-genetic-testing/) - Recently, we had a webinar on the genetics of HLH, part of which touched on genetic testing to receive a diagnosis or pinpoint a mutation. In histiocytic disorders, genetic testing can help bring someone a clear diagnosis. One important aspect of the work of the Histiocytosis Association is to help provide resources and information when you need it. To do
- [Histio Ambassadors Champion Advocacy at the World Orphan Drug Congress](https://histio.j2test.com/histio-ambassadors-champion-advocacy-at-the-world-orphan-drug-congress/) - During the last week of May, the World Orphan Drug Congress (WODC) had its annual meeting in Washington, D.C. Last year, I was able to attend this event for the second time and found it to be very beneficial for networking, learning, and sharing ideas. This year, while I was unable to attend myself, three
- [Ways to Advocate for Rare](https://histio.j2test.com/ways-to-advocate-for-rare/) - Last year I talked to you about Rare Across America with two former participants, Drew Freedman and Leisa Greathouse. Now, we want to invite you to find something in rare disease you want to help push forward through law and advocate for it. This year’s Rare Across America is on August 7th – 18th. On
- [Beyond the Diagnosis Episode 42 - Mother Knows Best: An LCH Parent’s Journey w/ Mia Graviano](https://histio.j2test.com/beyond-the-diagnosis-episode-42-mother-knows-best-an-lch-parents-journey-w-mia-graviano/) - In this episode we invite the parent’s perspective into the conversation about histiocytosis and hear about a histio mom’s journey with this rare disease and her advice for those currently going through it.
- [A Tale of Three Conferences](https://histio.j2test.com/a-tale-of-three-conferences/) - Here at the Histiocytosis Association we ended April strong and kicked the month of May off with a bang! Between all of us, we have attended three conferences in the past two weeks or so and the day this comes out, I will be at a fourth, the ASPHO Conference (American Society of Pediatric Hematology/Oncology)
- [Meet the Histiocytosis Association Team!](https://histio.j2test.com/meet-the-histiocytosis-association-team/) - At the Association, we strive to not just be a source of research and resources for our community, but to be a welcoming community in and of ourselves. As part of that mission, we wanted to share with you a little bit more about our team. We came up with several questions, serious and fun,
- [Episode 037 Findings from a Rare Cancer Caregiver Study w/Drs. Allison Applebaum and Eli Diamond](https://histio.j2test.com/episode-037-findings-from-a-rare-cancer-caregiver-study-w-drs-allison-applebaum-and-eli-diamond/) - In this episode we highlight an incredible study on caregivers, a very important piece in the puzzle of histiocytosis. Join Kathy as she speaks with Drs. Allison Applebaum and Eli Diamond about their recently completed caregiver study, the benefits and meaning that come from caregiving and the needs that exist in this very important role.
- [Scoring New Research Proposals](https://histio.j2test.com/scoring-new-research-proposals/) - This is an exciting time for the Association and its connections to the college and medical communities!! The Histio Student Scholarship application window just closed, and the next Research Grant application window is about to open! Starting this Monday, April 17th, the Histiocytosis Research Grant Program will be open for 2023. The program, as previously
- [Ep 031- The Best of the Beyond the Diagnosis Podcast: 2nd Anniversary Countdown Special](https://histio.j2test.com/ep-031-the-best-of-the-beyond-the-diagnosis-podcast-2nd-anniversary-countdown-special/) - On this 2nd anniversary of the podcast, we count down the top 10 most listened to episodes!
- [National Institutes of Health: Partners in the Fight](https://histio.j2test.com/national-institutes-of-health-partners-in-the-fight/) - With histiocytic disorders being rare, awareness to not only the medical community but also the government level of drug development, research, and health is important for the Histiocytosis Association team. That drives us to continue to champion awareness for histiocytosis at these levels. Research into histiocytosis receives little to no federal funding. Therefore, awareness around how
- [Adding Dollars to Academics: The Histio Student Scholarship Program](https://histio.j2test.com/adding-dollars-to-academics-the-histio-student-scholarship-program/) - Since its inception in 2019, the histio scholarship program has supported 11 histio warriors and 3 histio family members in their pursuit of a college degree. This is made possible through the support and generosity of the histio community, through gifts and a portion of proceeds from the Histio Hike Shenandoah. This year, we are excited
- [Ep 027 - Seeds of Funding – The Foundation of the Research Grants Program w/ Allie McFadden](https://histio.j2test.com/ep-027-seeds-of-funding-the-foundation-of-the-research-grants-program-w-allie-mcfadden/) - The first in a 3-part series, in this episode Kathy speaks with Allie McFadden, Association Fundraising Events Coordinator as we introduce you to our research grant process, starting at the very beginning – raising the money to fund the grants.
- [Wild Zebras Running Free: Rare Disease Day 2023](https://histio.j2test.com/wild-zebras-running-free-rare-disease-day-2023/) - “Look for horses, not zebras.” That’s what doctors often teach in medical school to those learning how to diagnose illnesses. Looking for the rare disease comes later. First, they are told to look at the obvious. This is part of why most histio warriors have such a long and draining journey to even get a
- [2022 Histiocytosis Association Research Grant Recipients](https://histio.j2test.com/2022-histiocytosis-association-research-grant-recipients/) - Our History of Research Funding At the very heart of the Histiocytosis Association is the steadfast commitment to finding a cure for histiocytic disorders. The Histiocytosis Association Research Grant Program was established in 1990 by the Association’s Board of Trustees with the objective of identifying and funding the most important and promising research initiatives –
- [Ep 026 - Education in the Histiocyte Society: What, Why and How w/ Dr. Michael Henry](https://histio.j2test.com/ep-026-education-in-the-histiocyte-society-what-why-and-how-w-dr-michael-henry/) - In this episode, Dr. Michael Henry, Chair of the Histiocyte Society Education Committee, shares with us how education is at the forefront of the Society from pilot programs to abstract scoring and so much more!
- [A Flyers Histio Night Two Years in the Making](https://histio.j2test.com/two-years-in-the-making-histio-night-at-the-flyers-2023/) - Slightly over a year ago, our former Communications Director started our first Histio Night at the Flyers in early 2022. Last week, we had the second annual Histio Night at the Flyers. This time with a wonderful after game meeting. Here to talk about it is our Strategic Communications Associate, Peter. A chill in the
- [Behind the Scenes of the Histiocytosis Association in 2023](https://histio.j2test.com/behind-the-scenes-of-the-histiocytosis-association-in-2023/) - I cannot believe we are already in 2023! Why does it feel like the years fly by the more we experience? In November, we held our HopeCast, where I shared some thoughts on what this new year would look like for us at the Histiocytosis Association, however I wanted to sit down to share more
- [Episode 025 - The 2022 HopeCast and Year End Update](https://histio.j2test.com/episode-025-the-2022-hopecast-and-year-end-update/) - On episode 25 of the Beyond the Diagnosis Podcast Kathy shares a replay of our HopeCast, originally broadcast on Giving Tuesday. Learn all about the accomplishments of 2022 and what’s on board for 2023.
- [Action in the Face of Grief from Rare Disease (HLH)](https://histio.j2test.com/action-in-the-face-of-grief-from-rare-disease-hlh/) - Rare Disease journeys can be long drawn-out battles with an unknown diagnosis for years. Sometimes they can be a quick bolt of lightning that comes out of nowhere and takes away a loved one. Last week, our Strategic Communications Associate, Peter, sat down with Maire Kyriacou to discuss the story of Lili, her daughter, who
- [Breakthrough for Histiocytosis: Cobimetinib Approval by the FDA](https://histio.j2test.com/breakthrough-for-histiocytosis-cobimetinib-approval-by-the-fda/) - There are over 7,000 rare diseases that affect more than 30 million people in the United States, and that number is even larger if you look across the globe. Histiocytic disorders make up approximately six of the 7,000 rare diseases. Histiocytosis, just like most rare diseases, can be life-threatening and treatment options are limited. It
- [Episode 024 – Family Group Collaborations – Working Together at Home and Abroad](https://histio.j2test.com/episode-024-family-group-collaborations-working-together-at-home-and-abroad/) - On episode 24 of the Beyond the Diagnosis Podcast Kathy talks with Dora Moustaka from Histio Hellas in Greece and Fernando Gotz from the OR Asociacion in Spain about their experience at the Histiocyte Society Annual Meeting in Stockholm and their hopes for the ongoing international family group collaboration.
- [8 Years of International Collaboration from Seed Funding](https://histio.j2test.com/8-years-of-international-collaboration-from-seed-funding/) - Collaboration noun. - The action of working with someone to produce or create something. A common part of our daily lives, and a critical part of advancing research for histiocytosis and other rare diseases. Investigators collaborating on projects can analyze a wider data set, access additional resources. By bringing together their expertise, knowledge, and passion,
- [Sisterhood and Survival: The Hope of Bone Marrow Registries](https://histio.j2test.com/sisterhood-and-survival-the-hope-of-bone-marrow-registries/) - It’s always a great feeling when we get to bring good news to this blog. There are many challenges that those with histiocytic disorders may face, but there are also many actions that we, as the Association and as individuals, can take to help mitigate the challenges. This week, we want to highlight the opportunities
- [Episode 23 - Focus on the Future – Interview with Kim Nichols, New President of the Histiocyte Society](https://histio.j2test.com/episode-23-focus-on-the-future-interview-with-kim-nichols-new-president-of-the-histiocyte-society/) - On Episode 23 of the Beyond the Diagnosis Podcast Kathy talks with Dr. Kim Nichols, the new President of the Histiocyte Society, and learns about her visions and goals for the next 3 years.
- [Highlights from this year’s meeting of the Histiocyte Society](https://histio.j2test.com/highlights-from-this-years-meeting-of-the-histiocyte-society/) - This is part 2 of our series recapping the events of the 38th Annual Histiocyte Society meeting. Click here for part 1. Every 3 years there is a passing of the torch between the old and new Histiocyte Society President. Briefly, the membership of the Society elects a president every 3 years, and there is
- [The 38th Annual Histiocyte Society Meeting: Building Bridges for a Cure](https://histio.j2test.com/38th-annual-histiocyte-society-meeting-building-bridges-for-a-cure/) - On September 17th, the Board of the Histiocyte Society gathered in Karolinska Institute in Stockholm, Sweden to kick off the 38th Annual Meeting of the Histiocyte Society, which continued on for the next three days. Being in my mid-thirties, it is inspiring and humbling that for my entire life, there has been an international effort
- [Episode 22 - Exciting Updates from Our 2021 Grant Recipients](https://histio.j2test.com/episode-22-exciting-updates-from-our-2021-grant-recipients/) - On Episode 022 of the Beyond the Diagnosis Podcast Kathy talks with 3 of the Association’s 2021 grant recipients about how they came up with their projects, what the grant application process was like for them and where their research stands today. Visit Spotify, Apple Podcasts, or anywhere you stream podcasts to tune in!
- [Resilience in Rare: The Other Half of the Battle](https://histio.j2test.com/resilience-in-rare-the-other-half-of-the-battle/) - In this post we will be focusing on a subject that is deeply important to those with Histiocytosis and other rare disorders. Resilience. To speak on this topic, our Strategic Communications Associate, Peter Yanefski will be joining me on the blog. Peter comes to this subject with the perspective of being a caregiver to his
- [Advocacy Series: Highlighting Rare Across America](https://histio.j2test.com/advocacy-series-highlighting-rare-across-america/) - As I mentioned in part one of our two part series on Advocacy, the role of advocacy in rare disease helps to ensure that policymakers and legislators know about challenges facing rare disease families, patients, and caregivers. In this post we are going to be looking at one of our ambassadors, Drew Freedman, and his experiences
- [Advocacy: The Small Rock in a Big Ocean](https://histio.j2test.com/advocacy-the-small-rock-in-a-big-ocean/) - Histiocytic disorders make up about six of the 7,000 rare diseases that exist today. When a condition is rare, it is unlikely that there will be federal funding to support research into treatments and cures. The treatments that are being developed for rare diseases are often forced into the requirements and timelines that treatments for
- [Episode 21 - Rolling and Running into September W/Histio Ambassadors](https://histio.j2test.com/episode-21-rolling-and-running-into-september-w-histio-ambassadors/) - On Episode 21 of the Beyond the Diagnosis Podcast Kathy talks with 3 special guests from the HA Ambassador Program with a focus on awareness. Come roll and run into September with us! Visit Spotify, Apple Podcasts, or anywhere you stream podcasts to tune in!
- [Advocacy Groups: A Powerful Network of Support](https://histio.j2test.com/advocacy-groups-a-powerful-network-of-support/) - We speak to patients and families every day; brave, strong, resilient individuals who share their histio journey. The families and physicians we connect with are from all around the world – in fact, we have connected with over 119 countries since the Association was founded! Many of those countries now have their own advocacy groups.
- [Episode 020 – Work, Beyond the Diagnosis: A Conversation with Cancer and Careers ](https://histio.j2test.com/episode-020-work-beyond-the-diagnosis-a-conversation-with-cancer-and-careers/) - In Episode 020 of the Beyond the Diagnosis Podcast, Kathy has a conversation with Rachel Becker, Deputy Director of Cancer and Careers, about the many useful resources the organization can provide to help with the issues that live at the intersection of a cancer diagnosis and work. Visit Spotify, Apple Podcasts, or anywhere you stream podcasts to
- [Episode 019 – A 2022 Mid-Year Update from the Histiocytosis Association, with Executive Director, Deanna Fournier ](https://histio.j2test.com/episode-019-a-2022-mid-year-update-from-the-histiocytosis-association-with-executive-director-deanna-fournier/) - In this mini-episode Kathy welcomes back Deanna Fournier, Executive Director of the Histiocytosis Association a mid-year update on what the Association has accomplished so far in 2022. If you’re curious about the exciting things that Association has been working on so far this year, then you don’t want to miss this episode! Visit Spotify, Apple Podcasts, or
- [Industry Update from the World Orphan Drug Congress](https://histio.j2test.com/industry-update-from-the-world-orphan-drug-congress/) - On July 11-13, I attended the World Orphan Drug Congress in Boston, Massachusetts. This congress has taken place for several years now and brings together people from all cross-sections of the pharmaceutical and orphan disease industry. It serves as a think-tank and idea sharing platform, as well as a way for individuals who may otherwise
- [Battle of the Warrior Ambassadors](https://histio.j2test.com/battle-of-the-warrior-ambassadors/) - We do not always understand why we face immense challenges in life. These challenges take many shapes and sizes from not receiving that acceptance letter, to losing a loved one, to facing a scary diagnosis. Yet these challenges often reveal something upon reflection: an opportunity. An opportunity to give back, to turn in the direction
- [Episode 018 - Beauty From Ashes: Channeling Grief with Michelle Phay](https://histio.j2test.com/episode-018-beauty-from-ashes-channeling-grief-with-michelle-phay/) - In Episode 018, Kathy speaks with Michelle Phay, wife of Dave Phay, who lost his life to HLH in 2018. Michelle talks about their experience with the disease, how she navigated through tests, treatments and over 27 different erroneous diagnoses, and how her grief fuels her to fulfill Dave’s 3 parting wishes. Visit Spotify, Apple Podcasts, or
- [Episode 017 - History Firsthand - An Account of the Origins of the Histiocytosis Association w/ Jeff Toughill](https://histio.j2test.com/episode-017-history-firsthand-an-account-of-the-origins-of-the-histiocytosis-association-w-jeff-toughill/) - Welcome to Episode 017 of the Beyond the Diagnosis Podcast. In this episode Kathy has the privilege of speaking with Jeff Toughill, Founder of the Histiocytosis Association and President until just a few short years ago to hear firsthand the inspiration behind the Association, how it started, how it grew and his vision for his
- [Episode 016 - Introducing the Histiocytosis Association Ambassador Program](https://histio.j2test.com/episode-016-introducing-the-histiocytosis-association-ambassador-program/) - In Episode 016 of the Beyond the Diagnosis Podcast, Kathy talks with 2 Association staff members and 2 of our volunteer Ambassadors about the recently launched Histiocytosis Association Ambassador Program. Come get all your questions answered about what the program is, what it means and how you can get involved!
- [Episode 015 - Erdheim-Chester Disease - Information, Resources and Hope from the Experts](https://histio.j2test.com/episode-015-erdheim-chester-disease-information-resources-and-hope-from-the-experts/) - In Episode 015 of the Beyond the Diagnosis Podcast, Kathy talks with a panel of 4 experts on ECD – 2 physicians and 2 representatives from the ECD Global Alliance to talk about advancements in disease diagnosis, various resources available to ECD patients, families and caregivers, and hope for the future.
- [Episode 014 - The Histiocytosis Association Scholarship Program](https://histio.j2test.com/episode-014-the-histiocytosis-association-scholarship-program/) - In Episode 014 of the Beyond the Diagnosis Podcast, Kathy invites back Deanna Fournier, Executive Director of the Histiocytosis Association to talk about the Histiocytosis Association Scholarship Program and how you or your loved one might be able to apply.
- [Episode 013 - Hiking Our Way to a Cure](https://histio.j2test.com/episode-013-hiking-our-way-to-a-cure/) - In Episode 013 of the Beyond the Diagnosis Podcast, Kathy sits down with Tracy Brown, histio mom and long-time supporter of the Histiocytosis Association. Tracy, along with her husband Ryan, started Histio Hike Shenandoah back in 2010 and in this episode we will learn all about the hike’s history, impact and how you can join
- [State Resource Researcher](https://histio.j2test.com/state-resource-researcher/) - Number of Volunteers Desired for Position: Multiple Position Overview: The State Resource Researcher will be responsible for periodically looking through the Histiocytosis Association website directories, checking the accuracy of the resources and investigating additional resources that can be included on the site. Please note that there will be times when the Association will be unable to use certain
- [Nolan: Ninja & HLH Warrior](https://histio.j2test.com/nolan-ninja-hlh-warrior/) - In this post, a guest blogger and mother to Nolan, shares her family's story of their journey with Hemophagocytic lymphohistiocytosis (HLH). We cannot thank the family enough for the courage and desire to allow us to spend some time getting to know them, and our wish is that this can offer hope to others who
- [Episode 012 - Rare Disease Day 2022](https://histio.j2test.com/episode-012-rare-disease-day-2022/) - In this episode of the Beyond the Diagnosis Podcast, Kathy talks with Debbie Drell, the Director of Membership for the National Office for Rare Disorders or NORD. Learn about Rare Disease Day 2022, how its impacted the rare disease world over the years and how you can get involved in Rare Disease Day this year.
- [Episode 011 - A Look Into the North American Consortium for Histiocytosis](https://histio.j2test.com/episode-011-a-look-into-the-north-american-consortium-for-histiocytosis/) - In Episode 011 of the Beyond the Diagnosis Podcast, Kathy sits down with Sara Clyburn, Project Coordinator for NACHO, the North American Consortium for Histiocytosis for a conversation about what consortia are, why they are important and what NACHO is doing to drive research for histiocytosis toward better treatments and ultimately a cure.
- [Episode 010 - A Year End Update from the Histiocytosis Association with Executive Director, Deanna Fournier](https://histio.j2test.com/episode-010-a-year-end-update-from-the-histiocytosis-association-with-executive-director-deanna-fournier/) - In Episode 010 of the Beyond the Diagnosis Podcast, Kathy welcomes back Deanna Fournier, Executive Director of the Histiocytosis Association for a conversation about what the Association has accomplished this year and what is planned for 2022. If you’re curious about the exciting things that Association has been up to this year and the plans
- [Clinical Trials: A Deeper Dive](https://histio.j2test.com/clinical-trials-a-deeper-dive/) - An in depth look at Clinical Trials with Be The Match Medical advancements take time and research. There are several types of studies and trials that are conducted during the medical research process, and in general, clinical research includes two types: observational studies and clinical trials. Both help researchers by involving people and are commonly
- [Episode 009 – Emotional Wellness Month and the Benefits of Yoga w/ Special Guest, Becka Florczyk from Becka Flo Yoga](https://histio.j2test.com/episode-009-emotional-wellness-month-and-the-benefits-of-yoga-w-special-guest-becka-florczyk-from-becka-flo-yoga/) - In Episode 009 of the Beyond the Diagnosis Podcast, Kathy talks with Becka Florczyk of Becka Flo Yoga about Emotional Wellness Month and some things we can do to improve and protect our own emotional and physical wellness. Whether you enjoy a current yoga practice or you’ve never stepped on the mat, this episode is
- [A Discussion on Genetic Testing and Histiocytosis](https://histio.j2test.com/a-discussion-on-genetic-testing-and-histiocytosis/) - When diagnosed with a rare disease, there are so many questions that need to be answered. One important aspect of the work of the Histiocytosis Association is to help provide resources and information when you need it. To do this, we often will reach out to other organizations or programs to learn as much as we can, then share that information out in
- [Episode 008 – The Ins and Outs of Clinical Trials and Our Research Grant Program – w/ Special Guest, Melissa Hines from St. Jude Children’s Research Hospital](https://histio.j2test.com/episode-008-the-ins-and-outs-of-clinical-trials-and-our-research-grant-program-w-special-guest-melissa-hines-from-st-jude-childrens-research-hospital/) - In Episode 008 of the Beyond the Diagnosis Podcast, Kathy has a very interesting conversation with Dr. Melissa Hines from St. Jude Children’s Research Hospital about how clinical trials work and learns about the process and reasoning behind Dr. Hines’ current clinical trial project that was funded by the Association in 2019.
- [Episode 007 - Why Raising Awareness is Critical and the Impact it Can Have](https://histio.j2test.com/episode-007-why-raising-awareness-is-critical-and-the-impact-it-can-have/) - In Episode 007 of the Beyond the Diagnosis Podcast, Kathy sits down with 4 very special guests for a panel discussion about the importance of raising awareness, what 3 different organizations are doing during Histiocytosis Awareness Month and how you can get involved.
- [Connecting with the Community](https://histio.j2test.com/july-2021/) - For many years, histiocytosis was thought to only or primarily affect children. Over the years, more adults have been diagnosed with histiocytic disorders which has changed how the Histiocytosis Association and those in the medical community support patients. The most commonly occurring in adults are, Langerhans cell histiocytosis (LCH), Erdheim-Chester Disease (ECD), and Rosai Dorfman
- [Episode 006 - LCH to Bullying, How One Patient is Using Her Experiences to Make a Difference](https://histio.j2test.com/episode-006-lch-to-bullying-how-one-patient-is-using-her-experiences-to-make-a-difference/) - In Episode 006 of the Beyond the Diagnosis Podcast, Kathy sits down with histio patient, Carol Fragoso, as she shares her inspiring story of accepting and overcoming the obstacles that histiocytosis has caused in her life. It is a story of hope, encouragement and paying it forward.
- [Heartfelt Histio Update](https://histio.j2test.com/june-2021-2/) - June marked the close of our Scholarship Program application window, and the start of the application window for the Histiocytosis Association Research Program. In my time on the Board of Trustees, I had learned a lot about both programs; the Research Program had been in operation for many years while the Scholarship Program was relatively
- [Learn About the OR Asociación (Spain)](https://histio.j2test.com/learn-about-the-or-asociacion-spain/) - THE STRUGGLE OF HISTIO WARRIORS - About the OR Asociación (Spain) by Fernando Gotz, President and Founder Eyal is a kid who has been fighting against Langerhans cell histiocytosis for over 12 years. With him our history is born. Eyal signifies strength and volunteering. In 2013, these two words impulsed Eyal's parents, Daniela and Fernando, to create, along with their good friend Marta, OR Asociación. The objective is
- [Episode 005 - Managing Stress in Difficult Times](https://histio.j2test.com/episode-005-managing-stress-in-difficult-times/) - In this episode Kathy puts her knowledge as a health coach to use as she talks about the affects that stress can have on the body and gives practical tips on how to mitigate those effects so you can live your life in the most happy, healthy and fulfilling way.
- [Journeying Back Out There](https://histio.j2test.com/june-2021/) - I hit the road in early May, the wind in my hair as I drove my Mini Cooper down the highway, westbound and headed out for our first in-person events since 2020! The excitement was palpable; after over a year of staying safe at home, the world finally felt as if it were opening. We had
- [Episode 004 - EveryLife Foundation, the STAT Act, and Rare Disease Week](https://histio.j2test.com/episode-004-everylife-foundation-the-stat-act-and-rare-disease-week/) - In this episode Kathy talks with Jamie Sullivan and Shannon von Felden from the EveryLife Foundation about the STAT Act, the upcoming Rare Disease Week and the impact that both of these initiatives have had and will have on the rare disease community.
- [Episode 003 - The Histiocyte Society – Hope for the Future](https://histio.j2test.com/episode-003/) - An interview with the President of the HS to learn about the work that they're doing and the vision for the future.
- [April 2021](https://histio.j2test.com/april-2021/) - Our fundraising events are incredibly special. While they do seek to bring together the community to raise funds for research and other important programs the Association runs, the emphasis at these events is on bringing together the community. I have had the honor of attending many of our events, as a patient, a Board Trustee, and
- [Episode 002 - A Glimpse Into the Histiocytosis Association](https://histio.j2test.com/episode-002-a-glimpse-into-the-histiocytosis-association/) - In Episode 2 we take a look into the Histiocytosis Association, staff roles, and future vision for the organization with Executive Director, Deanna Fournier.
- [Episode 001 - Introduction to Beyond the Diagnosis](https://histio.j2test.com/episode-001-introduction-to-beyond-the-diagnosis/) - About this Episode: Welcome to the premiere episode of the Beyond the Diagnosis podcast where we strive to bring you useful and timely information to inspire and encourage you on your journey with histiocytosis. In this episode, learn a little bit about your host, how the podcast came to be and what you can expect
- [March 2021](https://histio.j2test.com/march-2021/) - One of the ways we can propel progress is through advocacy. It seems impossible, to be able to sit with legislatures and policy makers, and to drive forward new processes and projects that can positively impact all rare diseases. The EveryLife Foundation turns this into reality for us, and you can get involved, too! In the beginning of 2021, I joined
- [February 2021](https://histio.j2test.com/february-2021/) - The National Organization for Rare Disorders (NORD) is an incredible group of individuals, dedicated to support the needs of patients, families, and organizations impacted by rare diseases and conditions. Last year, we were extremely grateful for the opportunity to receive support from the team at NORD to boost our internal processes and technologies, therefore bringing us to a new height in the support
- [January 2021](https://histio.j2test.com/january-2021/) - What can I say...? Last year was filled with challenges, and while as a rare disease community and organization we are familiar with challenge, last year proved difficult for us all. Looking back on 2020, I am so proud of the Association team for taking the opportunity to innovate and grow all throughout last year. We acquired many new skills, found ways to adapt,

## Pages

- [Homepage](https://histio.j2test.com/) - Fighting for a Cure Dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders while leading the search for a cure. You CanShare Hope Histio sucks, but you can share hope for those going through it by donating to the Histiocytosis Association. GIVE TODAY Newly Diagnosed? The Histiocytosis
- [Educational Videos](https://histio.j2test.com/resource-overview/educational-videos/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Educational Videos Educational Video Series The Histiocytosis Association is pleased to present a collection of educational videos highlighting common questions about histiocytic disorders, their symptoms and treatment. The videos feature 13 physicians and scientists from around the world who are leaders in
- [Education & Connection](https://histio.j2test.com/resource-overview/education-connection/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Education & Connection Histio Education One of the primary goals of the Histiocytosis Association is to provide the Histio Community with information that can help you better understand histiocytic disorders, their diagnosis, treaments and possible long-term effects. Click any of the sections
- [Resource Directory](https://histio.j2test.com/resource-overview/resource-directory/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Resource Directory When facing the diagnosis of a histiocytic disorder navigating the course can be overwhelming. Beyond the obvious medical challenges, there are many related issues to consider and address such as financial concerns and coping skills. With the help of dedicated
- [Physician Finder](https://histio.j2test.com/resource-overview/find-a-doctor/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Physician Finder Histiocytic disorders affect less than 200,000 children and adults in the United States each year. As such, histiocytic disorders are not widely known or understood by the general public, or even within the medical community. To assist our members in
- [Grants Awarded](https://histio.j2test.com/research/grants-awarded/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Grants Awarded The number of grants awarded by the Histiocytosis Association varies each year. It is determined by a variety of factors including, but not limited to, the quality of eligible applications received and the availability of funds. Use the filters below
- [Resources](https://histio.j2test.com/resource-overview/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Resources The Histiocytosis Association understands that patients and families fighting histiocytic disorders have complex needs. The Association is here to inform, empower and connect the members of this rare community – sharing knowledge and resources that will make the journey a little
- [Funding Opportunities](https://histio.j2test.com/research/funding-opportunities/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Funding Opportunities Request for Research Proposals The application window is now open until June 9th Proposals for scientific research are accepted for studies into the causes, mechanisms, and improved means of treatment for histiocytic disorders. Proposals are evaluated on the basis of
- [Clinical Trials](https://histio.j2test.com/research/clinical-trials/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Clinical Trials & Registries What is a Clinical Trial? According to www.clinicaltrials.gov, a clinical study [trial] involves research using human volunteers (also called participants) that is intended to add to medical knowledge. There are 2 types: observational studies and clinical trials. What
- [Annual Funding Process](https://histio.j2test.com/research/annual-funding-process/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Annual Funding Process Call for Applications The application window is now open until June 9th The Histiocytosis Association Research Program operates on an annual cycle. In the first quarter of each year, the Association begins a new cycle with an official announcement
- [Research](https://histio.j2test.com/research/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Research The Road To A Cure At the very heart of the Histiocytosis Association is the steadfast commitment to finding a cure for histiocytic disorders. The Histiocytosis Association Research Program was established in 1990 by the Association’s Board of Trustees with the
- [Diabetes Insipidus & Other Related Conditions](https://histio.j2test.com/histiocytic-disorders/diabetes-insipidus-other-related-conditions/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Diabetes Insipidus/ Arginine Vasopressin Deficiency Symptoms Diagnosis & treatment FAQ What Do I Do Now? Articles & Links Diabetes insipidus (DI), also now known as Arginine Vasopressin Deficiency (AVP-D), is a rare disorder that can occur as a consequence of histiocytosis involving
- [Malignant Histiocytosis](https://histio.j2test.com/histiocytic-disorders/malignant-histiocytosis/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Malignant Histiocytosis Symptoms Diagnosis & treatment FAQ What Do I Do Now? Articles & Links Malignant histiocytosis (MH) is an ultra-rare subtype of histiocytic neoplasms, with estimated incidence of less than 1 case per million population. MH can affect children as well
- [Xanthogranuloma](https://histio.j2test.com/histiocytic-disorders/xanthogranuloma/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Xanthogranuloma Symptoms Diagnosis and Treatment FAQ What Do I Do Now? Juvenile xanthogranuloma (JXG) is a rare type of histiocytic disorder that mostly occurs in children (average age 2 years), but can rarely occur in adults as well, in which case it
- [Rosai-Dorfman Disease](https://histio.j2test.com/histiocytic-disorders/rosai-dorfman-disease/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Rosai-Dorfman Disease Symptoms Diagnosis and Treatment FAQ What Do I Do Now? Rosai-Dorfman disease (RDD) previously known as sinus histiocytosis with massive lymphadenopathy (SHML), is a rare histiocytic disorder which involves the over-production of a type of white blood cell called non
- [Erdheim-Chester Disease](https://histio.j2test.com/histiocytic-disorders/erdheim-chester-disease/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Erdheim-Chester Disease Symptoms Diagnosis & Treatment Resources FAQ What Do I Do Now? Erdheim-Chester disease is a rare form of non-Langerhans cell histiocytosis. Its prevalence has increased significantly the past few years due to increased awareness about the disorder; about 1500 cases
- [Pulmonary Langerhans Cell Histiocytosis](https://histio.j2test.com/histiocytic-disorders/pulmonary-langerhans-cell-histiocytosis/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Pulmonary Langerhans Cell Histiocytosis Symptoms Diagnosis and Treatment FAQ What Do I Do Now? Single-system Pulmonary Langerhans cell histiocytosis (PLCH) is an uncommon type of Langerhans cell histiocytosis that affects only the lung. Langerhans cell histiocytosis (LCH) is blood disease which is
- [Langerhans Cell Histiocytosis in Children](https://histio.j2test.com/histiocytic-disorders/langerhans-cell-histiocytosis-in-children/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Langerhans Cell Histiocytosis in Children Symptoms Diagnosis and Treatment Permanent Consequences FAQ What Do I Do Now? Articles and Links Fact Sheets Langerhans cell histiocytosis (LCH) is the most common of the histiocytic disorders and occurs when the body accumulates too many
- [Langerhans cell Histiocytosis in Adults](https://histio.j2test.com/langerhans-cell-histiocytosis-in-adults/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Langerhans cell Histiocytosis in Adults Symptoms Diagnosis and Treatment Permanent Consequences FAQ What Do I Do Now? Articles and Links Fact Sheets Langerhans cell histiocytosis (LCH) in adults is a rare disorder that occurs when the body produces too many Langerhans cells
- [Hemophagocytic Syndromes](https://histio.j2test.com/histiocytic-disorders/hemophagocytic-syndromes/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Hemophagocytic Syndromes Symptoms Diagnosis and Treatment FAQ What Do I Do Now? Hemophagocytic lymphohistiocytosis (HLH) is a rare disorder of inflammation that was first thought to affect only young infants and children but is increasingly recognized in older children and adults. According
- [Overview of Histiocytic Disorders](https://histio.j2test.com/histiocytic-disorders/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Understanding Histio Overview of Histiocytic Disorders Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. 'Histio' = Tissue | 'Cyte' =
- [Home](https://histio.j2test.com/home/) - 4.88 Best-Rated Website Solution Start Building Test Drive FREE 100k+1k+ People Trust Impreza 2.5k+1k+ Average 5-Star Reviews analytics Market Analysis Quickly cultivate optimal processes and tactical architectures. Completely iterate covalent strategic theme areas via accurate e-markets. design_services Design Solutions Quickly cultivate optimal processes and tactical architectures. Completely iterate covalent strategic theme areas via accurate e-markets.
- [Los Angeles Education Meeting Overview](https://histio.j2test.com/la-meeting-2026/) - Meeting Overview Join us on Saturday, July 18, in Los Angeles, California, for a Histio Patient & Family Regional Meeting designed to educate, connect, and support individuals and families impacted by histiocytic disorders. The program will feature presentations from leading experts in histiocytosis care and research, covering all histiocytic disorders in both children and adults.
- [Volunteer Website Content Reviewer](https://histio.j2test.com/volunteer-website-content-reviewer/)
- [Caregivers, Friends & Community Members](https://histio.j2test.com/caregivers-friends-community-members/)
- [Patients](https://histio.j2test.com/patients/)
- [Sign up for our Newsletter and Emails](https://histio.j2test.com/sign-up-for-our-newsletter-and-emails/)
- [Healthcare Professional Directory](https://histio.j2test.com/healthcare-professional-directory/)
- [Peer Connections](https://histio.j2test.com/resource-overview/peer-connection/) - Peer Connections Histiocytosis Association Support Group Sessions For those navigating histiocytosis, we invite you to choose the support group that best fits your needs - whether you are a patient, caregiver, grieving a loved one, or seeking connection. Our Peer-to-Peer Support Groups provide safe, welcoming spaces to share experiences, feel understood, and find community and
- [Histio Book Request Form](https://histio.j2test.com/histio-book-request/)
- [Ambassador Interest Application](https://histio.j2test.com/ambassador-application-2026/)
- [Youth Ambassador Application Form](https://histio.j2test.com/youth-ambassador-application-form/)
- [Monkey Grins Request Form](https://histio.j2test.com/monkey-grins-form-2026/)
- [Youth Ambassador Application (2026)](https://histio.j2test.com/youth-ambassador-application-2026/)
- [Newsletter & Physician Finder Signup](https://histio.j2test.com/newsletter-physician-finder-signup/) - By completing the information below, you are subscribing to receive news and information from the Histiocytosis Association. We will provide you with customized content and the relevant information you need based on your interests. Keep an eye on your inbox for more information soon! Your Contact Information (your email address is for internal use only
- [Ambassador Application Form](https://histio.j2test.com/ambassador-interest/)
- [Jeff Toughill 1940-2026](https://histio.j2test.com/jeff-toughill-in-memoriam/) - Remembering Jeff Toughill Below, we have compiled stories and tributes to Jeff that the community, staff and physicians have submitted since Jeff's passing, to remember the impact of his work and his legacy on the histio community. My deepest condolences to Jeff's family. His vision and dedication transformed the LCH community forever. Through his compassion
- [Jeffrey Toughill - In Memorial](https://histio.j2test.com/jeffrey-toughill-in-memorial/)
- [About Us](https://histio.j2test.com/about/) - Who We Are About The Association The Histiocytosis Association is the only organization of its kind, a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders, that connects patient and medical communities around the world with the resources needed along every step of the
- [Summit Program](https://histio.j2test.com/summit-program/) - 2025 Histiocytosis Patient and Family Summit Program Click on the first image below to click through the whole program. Or click here to download the pdf
- [2025 Histiocytosis Summit](https://histio.j2test.com/2025-patient-and-family-summit/) - Join us for the 2025 Histiocytosis Patient & Family Summit! Event Information Join us September 26th and 27th for an empowering and informative experience at the 2025 Histio Patient and Family Summit. This event is dedicated to all individuals, caregivers, families, advocates, and healthcare partners impacted by histiocytic disorders. Our goal is to provide education,
- [Sidebar Example](https://histio.j2test.com/sidebar-example/) - Subheading Add modules Understanding Histio Overview of Histiocytic Disorders Hemophagocytic Syndromes Langerhans cell Histiocytosis in Adults Langerhans cell Histiocytosis in Children Pulmonary Langerhans cell Histiocytosis Erdheim-Chester Disease Rosai-Dorfman Disease Xanthogranuloma Malignant Histiocytosis Diabetes Insipidus/Arginine Vasopressin Deficiency Research The Road to a Cure Annual Funding Process Registries, Clinical Trials, & Genomic Sequencing Grants Awarded Funding Opportunities
- [Ambassador Hank](https://histio.j2test.com/histio-ambassadors-hank-heren/) - Meet Hank Preview modal- Meet Hank My story begins in late 2018. I spent a few months in Germany with my son and daughter-in-law as they fulfilled a military obligation. During my free time, I enjoyed cycling, but I started experiencing abdominal pains that never went away. Upon returning home, I immediately made an appointment
- [Help us Learn More About You](https://histio.j2test.com/help-us-learn-more/) - Help us learn more about you Welcome to the Histio Community! The Histiocytosis Association team knows that everyone's journey with histiocytosis is different. Whenever possible, we develop and compile resources, programs, and services that are tailored to your specific diagnosis, relationship to histiocytosis, location, and point in the journey. Please choose below, the option that
- [Former Board Trustees](https://histio.j2test.com/former-board-trustees/) - Former Board Trustees Bradley Comp Trustee Ayco, a Goldman Sachs CompanyLos Angeles, CA Read Bio Preview modal- Bradley Comp Bradley Comp has been with Ayco, a Goldman Sachs Company for 30 years and currently serves as a Senior Vice President in their west coast office, located in Southern California. Ayco provides financial education/counseling, family office
- [Hopecast 2024](https://histio.j2test.com/hopecast-2024/)
- [2024 Pitman Patient and Family Regional Meeting](https://histio.j2test.com/2024-pitman-patient-and-family-regional-meeting/) - 2024 Pitman Patient and Family Regional Meeting Meeting Overview We are excited to host a Patient and Family Regional Meeting, on Saturday, August 24th in Pitman, New Jersey. The agenda includes talks covering all histiocytic disorders, information on clinical trials and registries, emotional support, well-being, and diagnosing histiocytosis. Open to all impacted by a histiocytic disorder. Medical professionals
- [Summer FUNdraising Ideas](https://histio.j2test.com/summer-fundraising-ideas/) - Whether it's a bake sale, a birthday celebration, a lemonade stand, or something you dream up, we're here to assist you in whatever way inspires you. Let your passion and creativity drive you to make a meaningful impact for patients and families in our Histio Community. If you need a little more inspiration, here are
- [Orange County Patient and Family Regional Meeting](https://histio.j2test.com/orange-county-patient-and-family-regional-meeting/) - 2024 Orange County Patient and Family Regional Meeting Conference Overview We are excited to host a Patient and Family Regional Meeting, on Saturday, June 1st in Orange, California. The agenda includes talks covering all histiocytic disorders, information on clinical trials and registries, emotional support, well-being, and diagnosing histiocytosis. The Histiocytosis Association is grateful to be
- [Spanish-Language Brochures](https://histio.j2test.com/spanish-language-brochures/) - Folletos en Español Haga clic en las fotos para ir al folleto en formato pdf. (Click on the photos to go to the brochure pdf).
- [Sign Up to Receive the Latest Histio Information](https://histio.j2test.com/new-contact-landing-page/) - Welcome Welcome to the Histio Community! The Histiocytosis Association team knows that everyone's journey with histiocytosis is different. Whenever possible, we develop and compile resources, programs, and services that are tailored to your specific diagnosis, relationship to histiocytosis, location, and point in the journey. Please choose below, the option that best represents you, to ensure
- [Honorary Ambassadors Who Have Served](https://histio.j2test.com/honorary-ambassadors-who-have-served/) - Honorary Ambassadors Who have Served Meet Lindsey Preview modal- Meet Lindsey Hi! My name is Lindsey. I am a nurse at Children's Hospital of Philadelphia. I was four years old, about to turn five, when I was diagnosed with Langerhans Cell Histiocytosis in my skull. I was very fortunate because the tumor was removed with
- [2023 Impact at a Glance](https://histio.j2test.com/progress/) - "I remember all too well my own journey with Langerhans cell histiocytosis in 1992; the limited information that existed and the limited treatment options. I remember so clearly how much had changed by 2017 when I joined the Board of Trustees; it was evident the impact the discovery of genetic mutations had made on the
- [Ingrassia Early Career Travel Scholarship](https://histio.j2test.com/ingrassia-early-career-travel-scholarship/) - Travel Scholarship Applications Open on March 3rd History of the Scholarship Joseph Ingrassia was a long time friend, supporter and board member of the Histiocytosis Association and histio community. During his life, he played an instrumental role in helping the Histiocytosis Association with its longest standing and largest fundraiser, and offered his support for
- [Histio Care Bag Program](https://histio.j2test.com/histio-care-bag-program/) - The Histio Warrior Care Bag Program The Histiocytosis Association is dedicated to providing emotional and educational support to address the needs of patients and families affected by histiocytic disorders. In addition to providing reliable, disease-specific information and resources, we also hope to provide a source of comfort and connection to the Histio Community. To learn
- [Histiocytosis Brochures](https://histio.j2test.com/brochures/) - Brochures Click on the images to download a printable version of the brochures ECD XG/JXG HLH LCH in Adults LCH in Children PLCH RDD
- [Test for P&F Con](https://histio.j2test.com/test-for-pf-con/)
- [2023 Patient and Family Conference on Histiocytic Disorders](https://histio.j2test.com/2023-patient-and-family-conference-on-histiocytic-disorders/)
- [Physicians Resource Center](https://histio.j2test.com/physicians-resource-center/) - Physicians' Resource Center Welcome The Histiocytosis Association was created to help patients and families navigate all types of histiocytic disorders. To that end, we have provided a list of resources you as medical professionals can use to gain more knowledge on histiocytic disorders and to share with your patients and their families to better understand
- [Sofia's Story](https://histio.j2test.com/sofias-story/) - Sofia's Story By Dave Wardle, Aptos, Calif. - It has been very hard to write this page because it brings back so many memories, and even the happy ones can still be painful. Sofia was a beautiful child, a loving daughter, a big sister and good friend to many. To strangers who saw her on
- [Histiocytosis Poster](https://histio.j2test.com/histiocytosis-poster/) - Welcome! We're the Histiocytosis Association! Please see a list of our ambassadors and some of their most recent accomplishments. Also, find out about our partnership opportunities, and research funding. If are looking for a doctor in your area, please visit our physician directory below. If you need to contact us, please email us at info@histio.org.
- [(no title)](https://histio.j2test.com/ambassadors-michellep/) - Click Here to return to the full ambassador page
- [Histio Ambassadors](https://histio.j2test.com/histio-ambassadors/) - The Ambassador Program Our Ambassador Program offers two meaningful pathways for volunteer leadership-one for adults (18+) and one designed specifically for youth ages 12-17 in partnership with a parent or guardian. Histio Ambassadors are patients, survivors, caregivers, and family members who bring lived experience and a shared commitment to raising awareness, supporting research, advocating for
- [Peer Chats](https://histio.j2test.com/resource-overview/peer-connection-pre2026/) - Peer Connections Histiocytosis Association Support Group Sessions For those navigating histiocytosis, we invite you to choose the support group that best fits your needs - whether you are a patient, caregiver, grieving a loved one, or seeking connection. Our Peer-to-Peer Support Groups provide safe, welcoming spaces to share experiences, feel understood, and find community and
- [Regional Meetings](https://histio.j2test.com/resource-overview/regional-meetings/) - Regional Meetings The rarity of histiocytic disorders makes it difficult for patients and families to have the opportunity to meet and share with others who understand what they are going through. It is common for patients and families to feel alone and hopeless as they face the devastating effects of histiocytic disorders. Regional Meetings offer
- [Yoga For Histio](https://histio.j2test.com/resource-overview/yoga-for-histio/) - Yoga Classes Designed With You In Mind Emotional and physical wellness are important for everyone. And, when we are faced with an obstacle such as receiving a diagnosis of a rare disease or knowing that a loved one is ill, it is more difficult to focus on our emotional and physical wellbeing. The National Institutes
- [Webinars](https://histio.j2test.com/resource-overview/webinars/) - Upcoming Webinars Mental Health Series This May, for Mental Health Awareness month we're hosting a series of webinars to create a space to focus on what it means to care for your whole self. Together, we'll explore practical tools for emotional balance and everyday wellness-offering support, insight, and a chance to recharge for those receiving
- [Beyond The Diagnosis Podcast](https://histio.j2test.com/beyond-the-diagnosis-podcast/) - A podcast that goes beyond a histiocytic disorders diagnosis The Beyond the Diagnosis podcast was created to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help you on your histio journey. This podcast provides an additional platform by which you can consume
- [Monkey Grins](https://histio.j2test.com/monkey-grins/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Request a Monkey Grin Could your family use a smile? Would you like to get one in the mail? Then you might be interested in receiving
- [Ambassador & Volunteer Program](https://histio.j2test.com/ambassador-volunteer-program/) - Join Our Team! Are you someone who is passionate about making a difference in the lives of others? Do you enjoy connecting with and helping patients and families feel like they are not alone while dealing with rare diseases? We are looking for energetic and skilled individuals to join our team! Openings are listed below.
- [SPII Fundraising Dinner](https://histio.j2test.com/spii/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional 32nd Annual Fundraiser for Histiocytosis Thank you for your continued support of the Histiocytosis Association over these last 32 years of this special fundraising event!
- [Research Grants Terms & Conditions](https://histio.j2test.com/research-grants-terms-conditions/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Terms & Conditions for Successful Research Grant recipients Complete Funding Acceptance Agreement All terms, conditions, expectations and due dates will be outlined in a Funding Acceptance
- [Research Grants FAQs](https://histio.j2test.com/research-grants-faqs/) - Application Process FAQs Who is eligible to apply for a grant? In order to be eligible for a Histiocytosis Association grant, an applicant must be a full-time faculty member at an academic institution. Does the grant program accept applications for International projects or only those in the United States? The Histiocytosis Association grant program is
- [Scholarship Donations](https://histio.j2test.com/scholarship-donations/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Scholarship Fund
- [Scholarship Application](https://histio.j2test.com/scholarship-application/) - Scholarship Application 2026 Histio Student Scholarship Application Form Loading…
- [Monthly Giving](https://histio.j2test.com/monthly-giving/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Automate Your Gift You can choose to have your gift automatically processed weekly or monthly on your preferred date by selecting your preferences below.
- [Matching and Workplace Gifts](https://histio.j2test.com/matching-and-workplace-gifts/) - Workplace Giving Campaigns United Way The United Way Worldwide is a nonprofit organization that works with more than 1,200 local United Way offices throughout the country in a coalition of charitable organizations to pool efforts in fundraising and support. The issues the United Way offices focus on are determined locally because communities differ, but the
- [Legacy and Planned Giving](https://histio.j2test.com/legacy-and-planned-giving/) - Legacy and Planned Giving Legacy Gifts and Planned Giving Benefits of Planned Giving Planned Giving provides donors with the ability to support nonprofit associations and charities by arranging for gifts to be made through financial or estate planning. This practice enables donors to make charitable gifts now and establishes provisions for gifts that will continue
- [The Cycle](https://histio.j2test.com/the-cycle/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional "The Cycle" illustrates how each aspect of our work leads to and sustains the next, creating a continuous succession of effective investment and reinvestment. Each of the
- [Donate Now](https://histio.j2test.com/donatenow/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional The importance of your support of the Histiocytosis Association cannot be underestimated. With your help, we can continue our efforts in the fight against histiocytic disorders.
- [Healthcare Professionals](https://histio.j2test.com/healthcare-professionals/) - The Histiocytosis Association understands that patients and families fighting histiocytic disorders have complex needs. The Association is here to inform, empower and connect the members of this rare community - sharing knowledge and resources that will make the journey a little easier. Newly Diagnosed Patients and Caregivers Researchers Healthcare Professionals Newly Diagnosed Learn About Histiocytic
- [Researchers](https://histio.j2test.com/researchers/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional The Histiocytosis Association understands that patients and families fighting histiocytic disorders have complex needs. The Association is here to inform, empower and connect the members of
- [Patients & Caregivers](https://histio.j2test.com/patients-caregivers/) - The Histiocytosis Association understands that patients and families fighting histiocytic disorders have complex needs. The Association is here to inform, empower and connect the members of this rare community - sharing knowledge and resources that will make the journey a little easier. Newly Diagnosed Patients and Caregivers Researchers Healthcare Professionals Newly Diagnosed Learn About Histiocytic
- [Newly Diagnosed](https://histio.j2test.com/newly-diagnosed/) - Newly Diagnosed The Histiocytosis Association understands that patients and families fighting histiocytic disorders have complex needs. The Association is here to inform, empower and connect the members of this rare community - sharing knowledge and resources that will make the journey a little easier. Newly Diagnosed Patients and Caregivers Researchers Healthcare Professionals Newly Diagnosed Learn
- [State Fundraising Notices](https://histio.j2test.com/state-fundraising-notices/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional The Histiocytosis Association is a New Jersey-based not-for-profit corporation (EIN#22-2827069) that is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding
- [Site Map](https://histio.j2test.com/site-map/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional histio.local/ Pages Homepage The Cycle Donate Now Newly Diagnosed Patients & Caregivers Researchers Healthcare Professionals Privacy Policy About Us Contact the Association Impacting the Histio Community
- [Other Ways to Give](https://histio.j2test.com/get-involved/other-ways-to-give/) - Other Ways To Give There Are Many Unique Ways to Give The importance of your support of the Histiocytosis Association cannot be underestimated. With your help, we can continue our efforts in the fight against histiocytic disorders. We've compiled a list of just a few of the many unique ways you can help support the
- [Annual Campaigns](https://histio.j2test.com/get-involved/annual-campaigns/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Ways to support Histio Warriors throughout the year There are opportunities to contribute to research, student scholarships, awareness and more all year round through our general
- [Join Our Online Communtity](https://histio.j2test.com/get-involved/join-our-online-communtity/)
- [Terms of Use](https://histio.j2test.com/termsofuse/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional The Histiocytosis Association provides the www.histio.org website solely for the general information and awareness of the visitor. None of the information presented is intended for diagnostic or treatment
- [Partnerships & Sponsors](https://histio.j2test.com/about-2-2/partnerships-sponsors/) - Thank You! We are grateful for the many people, companies, pharmaceutical companies, foundations, organizations, and institutions who have helped us and partnered with us over the years - whether by giving time, ideas, support, resources, or helping to fund our programs. Sponsors Join the fight! Sponsorship Opportunities Available Now! This website has been made possible
- [Organizational History](https://histio.j2test.com/about-2-2/organizational-history/) - Organizational History 40 Years Strong In 1986, Jeffrey Toughill, spearheaded a global organization that supports the histiocytosis community. He supported histio patients and families by providing a safe space, listening ear, education, community, and help in finding the right medical team. Our former Executive Director Deanna Fournier was diagnosed with Langerhans cell histiocytosis (LCH) at the age of 6
- [Donate](https://histio.j2test.com/get-involved/donate/) - We Need Your Help to Find a Cure The importance of your support of the Histiocytosis Association cannot be underestimated. With your help, we can continue our efforts in the fight against histiocytic disorders. Please consider this and accept our gratitude when making your donation today. One Time Gift Make a one-time gift in any
- [How to Get Involved](https://histio.j2test.com/get-involved/how-to-get-involved/) - Get Involved How To Get Involved Newly Diagnosed Patients and Caregivers Researchers Healthcare Professionals Newly Diagnosed Sign Up for Email Updates Register for the information you would like to receive including: research updates, patient and caregiver resources, events, medical articles, and more! Watch Educational Videos or Attend a Live Webinar Connect with people with similar
- [Raise Awareness](https://histio.j2test.com/get-involved/raise-awareness/) - Raise Awareness How WE Raise Awareness Histiocytosis Awareness Month September is Histiocytosis Awareness Month. We initiated and continue to celebrate Histiocytosis Awareness Month in September for many reasons: to shine the light on histiocytic disorders, to foster hope in the Histio Community, and to engage and inspire people to get involved with the Histiocytosis Association.
- [Fundraising Events](https://histio.j2test.com/get-involved/fundraising-events/) - Host Your Own Event Many events have been held throughout the years by dedicated members of the Histio Community, which have made a huge impact on research, awareness, education, and the fight for better treatments and cure. We are so grateful to the families and friends who have contributed to our fundraising events! It is
- [Scholarship Program](https://histio.j2test.com/resource-overview/scholarship-program/) - Student Scholarship Program The 2026 Scholarship Program is now accepting applications til April 3rd The Histiocytosis Association is honored to provide an educational scholarship program for those impacted by histiocytic disorders in the United States. The Histio Student Scholarship Program celebrates the many advances in research and medicine that are now making it possible for
- [Impacting the Histio Community](https://histio.j2test.com/about-2-2/impacting-the-histio-community/) - Impacting the Histio Community Helping the Histio Community through Research, Education and Outreach Each year the Histiocytosis Association aims to help those within the histiocytosis community by providing much needed education while funding the path to a cure. How We Impact Histio Research Promoting new and emerging treatments through sponsorship of clinical trials and studies. Providing
- [COVID-19 Information](https://histio.j2test.com/histiocytic-disorders/covid19/) - COVID-19 Histio Hub The health and safety of you and your family - our Histio Community - is of utmost importance to us. We have been closely monitoring the developments of the coronavirus (COVID-19) as well as the professional advice being released by different health agencies across the globe, such as the Centers for Disease Control
- [Blackbaud SSO](https://histio.j2test.com/bb-login/) - [bb-sso-url]
- [Sign In](https://histio.j2test.com/login/) - Online Community Login [custom-login-form] First time logging into the new site? You will need to create a new account, even if you have previously registered with our old site. Click the Register button below and enter your email address. You will receive an email to confirm your email address and be given a link to
- [User Profile](https://histio.j2test.com/user-profile/) - [account-info]
- [Register](https://histio.j2test.com/user-register/) - [custom-register-form]
- [Forgot Your Password?](https://histio.j2test.com/user-password-lost/) - [custom-password-lost-form]
- [Reset Your Password](https://histio.j2test.com/user-password-reset/) - [custom-password-reset-form]
- [Calendar](https://histio.j2test.com/events/)
- [Blog](https://histio.j2test.com/blog/) - This is now The Histio Blog: A Community Blog. We have had so many great guest writers over the years from our community, so we figured, let's have our community be the main voice of the blog. One of the blog's main contributors is from Barb Adams, author of the histio children's books: "Someone I Know
- [Privacy Policy](https://histio.j2test.com/privacy-policy-2/) - Commitment to Privacy Since our establishment in 1986, the Histiocytosis Association has been dedicated to preserving the confidentiality of the personal information of our donors and members. To demonstrate the importance of your privacy, the Histiocytosis Association has established this policy outlining our usage of any personal information collected by our organization. Histiocytosis Association, Inc.
- [About Us](https://histio.j2test.com/about-2-2/) - Who We Are About The Association The Histiocytosis Association is the only organization of its kind, a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders, that connects patient and medical communities around the world with the resources needed along every step of the
- [Contact the Association](https://histio.j2test.com/contact/) - I am... Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional I am... Select a group Newly Diagnosed A Patient or Caregiver A Researcher A Healthcare Professional Ways To Connect With Us We would love to hear from you and help you get the information and resources you need as you navigate histiocytosis.

## Grants

- [Mechanism of Interferon Gamma Induced Liver Sinusoidal Endothelial Cell Disruption in Familial Hemophagocytic Lymphohistiocytosis Hepatitis](https://histio.j2test.com/grants/mechanism-of-interferon-gamma-induced-liver-sinusoidal-endothelial-cell-disruption-in-familial-hemophagocytic-lymphohistiocytosis-hepatitis/) - Principal Investigator: Tamir Diamond Children’s Hospital of Philadelphia, Philadelphia, PA USA Date of Award: December 2025 Amount of Award: 51,000 (Founder's Grant and Toughill Prize) Layperson Summary: This project’s goal is to improve care for children suffering from hemophagocytic lymphohistiocytosis (HLH) liver failure. This is a common cause of acute liver failure in children under the
- [Evaluation of the Bromodomain and Extra Terminal (BET) Domain Activity as an actionable Target in Hemophagocytic Lymphohistiocytosis (HLH)](https://histio.j2test.com/grants/evaluation-of-the-bromodomain-and-extra-terminal-bet-domain-activity-as-an-actionable-target-in-hemophagocytic-lymphohistiocytosis-hlh/) - Principal Investigator: Polina Shindiapina The Ohio State University, Ohio, USA Date of Award: December 2025 Amount of Award: 50,000 Layperson Summary: Hemophagocytic lymphohistiocytosis/macrophage activation syndrome, also known as HLH/MAS, is a rare but often fatal disease in adults. Normally, our immune system responds to infections or to cancer by killing the offending infection or destroying cancer
- [Deciphering neurodegeneration in LCH](https://histio.j2test.com/grants/deciphering-neurodegeneration-in-lch/) - Principal Investigator: Raphaela Schwentner St. Anna Children’s Cancer Research Institute, Vienna, Austria Date of Award: December 2025 Amount of Award: 50,000 Layperson Summary: Langerhans cell histiocytosis (LCH) is a rare disease that mostly affects children. It is a disease that is based on mutations in a specific signaling pathway, the MAPK pathway. In 50-60% of cases a single mutation, called BRAFV600E, is the cause of
- [Mapping the Spatial Heterogeneity and Ontogeny of Pathogenic Dendritic Cells in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/mapping-the-spatial-heterogeneity-and-ontogeny-of-pathogenic-dendritic-cells-in-langerhans-cell-histiocytosis/) - Principal Investigator: Florent Ginhoux Gustave Roussy, Villejuif, France Date of Award: December 2025 Amount of Award: 50,000 This project was made possible in partnership with the Histiocytosis Association of Canada (HAC). Layperson Summary: This project focuses on Langerhans Cell Histiocytosis (LCH), a rare disease in which abnormal immune cells build up in tissues and cause damage. These cells are known to carry specific markers (CD1a and CD207)
- [Exploring Macrophage Differentiation In The Context Of Xanthogranuloma](https://histio.j2test.com/grants/exploring-macrophage-differentiation-in-the-context-of-xanthogranuloma/) - Principal Investigator: Astrid van Halteren Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands Date of Award: December 2024 Amount of Award: $50,000 Layperson Summary: The histiocytoses are rare disorders confined to the hematopoietic system, an organ system responsible for the daily production of various types of white and red blood cells. These diseases cause inflammation and
- [Validation and Implementation of a Novel Tool for Predicting Pathogenicity of Variants of Uncertain Significance in Familial Hemophagocytic Lymphohistiocytosis Genes](https://histio.j2test.com/grants/validation-and-implementation-of-a-novel-tool-for-predicting-pathogenicity-of-variants-of-uncertain-significance-in-familial-hemophagocytic-lymphohistiocytosis-genes/) - Principal Investigator: Kim Nichols St. Jude Children's Hospital, Memphis,Tennesse,USA Date of Award: December 2024 Amount of Award: $50,000 Layperson Summary: Normally, when the immune system of a healthy person is faced with a challenge, such as a virus or a cancer cell, the immune system becomes activated and destroys these target cells. The immune system
- [Single cell genomic analysis of the clonal architecture of histiocytic neoplasms](https://histio.j2test.com/grants/single-cell-genomic-analysis-of-the-clonal-architecture-of-histiocytic-neoplasms/) - Principal Investigator: Paul Milne Haematopoesis and Immunity Lab, Newcastle University, Newcastle upon Tyne,UK Date of Award: December 2024 Amount of Award: $50,000 Layperson Summary: Langerhans cell histiocytosis (LCH) and Erdheim Chester disease (ECO) are caused by a mutation, most commonly BRAFV600E, that occurs at some point in the development of white blood cells. These cells
- [Spatial understanding of Erdheim-Chester Disease and associated neurodegeneration for future precision medicine](https://histio.j2test.com/grants/spatial-understanding-of-erdheim-chester-disease-and-associated-neurodegeneration-for-future-precision-medicine/) - Principal Investigator: Egle Kvedaraite Karolinska lnstitutet and Karolinska University Hospital, Stockholm, Sweden Date of Award: December 2024 Amount of Award: $51,000 (Founder’s Grant and Toughill Prize) Layperson Summary: ECD is a rare disease that can affect many different organs, including the brain. A certain type of mutation called BRAFV600E as well as other mutations have been
- [Prime editing-based correction of UNC13D](https://histio.j2test.com/grants/prime-editing-based-correction-of-unc13d/) - Principal Investigator: Dr. Toni Cathomen Medical Center - University of Freiburg Breisgau, Germany Date of Award: December 2024 Amount of Award: $50,000 Layperson Summary: Familial hemophagocytic lymphohistiocytosis (FHL) is a severe inherited disorder in which the immune system becomes hyperactive. FHL type 3 (FHL3) is caused by mutations in a gene called UNC13D and accounts
- [Heterogeneity in Histiocytosis associated Neurodegeneration using iPSC models](https://histio.j2test.com/grants/heterogeneity-in-histiocytosis-associated-neurodegeneration-using-ipsc-models/) - Principal Investigator: Nicole Coufal, MD University of California, San Diego La Jolla, CA USA Date of Award: December 2023 Amount of Award: $51,000 (Founder's Grant and Toughill Prize) Layperson Summary: Neurodegeneration in patients with histiocytic disorders, especially Langerhans Cell Histiocytosis (LCH), is one of the most devastating, poorly understood, and treatment resistant long-term problems associated
- [Evaluation of protein arginine methyltransferase 5 (PRMT5) as an actionable target in hemophagocytic lymphohistiocytosis (HLH)](https://histio.j2test.com/grants/heterogeneity-in-histiocytosis-associated-neurodegeneration-using-ipsc-models-2/) - Principal Investigator: Polina Shindiapina Ohio State University Columbus, OH USA Date of Award: December 2023 Amount of Award: $50,000 Layperson Summary: Hemophagocytic lymphohistiocytosis, also known as HLH, is a rare but often fatal disease in adults. Normally, our immune system responds to infections or to cancer by killing the offending infection or destroying cancer cells. In HLH,
- [DOCK Genes: Novel Risk Alleles for Cytokine Storm Syndrome](https://histio.j2test.com/grants/evaluation-of-protein-arginine-methyltransferase-5-prmt5-as-an-actionable-target-in-hemophagocytic-lymphohistiocytosis-hlh/) - Principal Investigator: Randy Cron University of Alabama at Birmingham Brimingham, AL USA Date of Award: December 2023 Award Amount: $50,000 Layperson Summary: Macrophage activation syndrome (MAS) is related to a group of disorders called hemophagocytic lymphohistiocytosis (HLH), characterized by overly active white blood cells, including histiocytes. Although the genetic or familial form of HLH is rare affecting
- [H Syndrome as a Model for Rare Histiocytoses](https://histio.j2test.com/grants/h-syndrome-as-a-model-for-rare-histiocytoses/) - Principal Investigator: Ruthy Shiloh PhD. and Sarah Elitzur MD Schneider Children's Medical Center Petach Tikva, Israel Date of Award: December 2023 Amount of Award: $50,000 Layperson Summary: Histiocytoses are disorders characterized by the abnormal accumulation of specialized blood cells (called histiocytes) in body tissues and organs that may lead to severe disability and death. A
- [Burden of morbidity and premature mortality in patients with Langerhans cell histiocytosis ](https://histio.j2test.com/grants/burden-of-morbidity-and-premature-mortality-in-patients-with-langerhans-cell-histiocytosis/) - Principal Investigator: Dr. Gaurav Goyal University of Alabama Birmingham, AL Date of Award: December 2022 Amount of Award: $50,000 Layperson Summary: Langerhans cell histiocytosis (LCH) is a rare type of blood cancer that can affect any organ system of the body in children and adults. Thanks to improvements in treatments, some studies have suggested that
- [Defining the pathophysiology of HLH in Hematologic Malignancies](https://histio.j2test.com/grants/defining-the-pathophysiology-of-hlh-in-hematologic-malignancies/) - Principal Investigator: Dr. Michael Jordan Cincinnati Children's Hospital Medical Center Cincinatti, OH Date of Award: December 2022 Amount of Award: $50,000 Layperson Summary: Hemophagocytic lymphohistiocytosis (HLH) is a life-threatening histiocytic disorder that has been recognized for decades as both a condition which runs in families and one which can occur sporadically in individuals with cancer and
- [Defining and Testing the Hyperinflammatory Immune Synapse](https://histio.j2test.com/grants/defining-and-testing-the-hyperinflammatory-immune-synapse/) - Principal Investigator: Dr. Scott Canna Children's Hospital of Philadelphia Philadelphia, PA Date of Award: December 2022 Amount of Award: $50,000 Layperson Summary: Inflammation protects against infections but must also be carefully regulated to prevent collateral damage and disease. Hemophagocytic Lymphohistiocytosis (HLH) is a term often used to describe a syndrome of damaging systemic inflammation caused
- [Immunoproteasome inhibition as a novel therapy for hemophagocytic lymphohistiocytosis (HLH)](https://histio.j2test.com/grants/immunoproteasome-inhibition-as-a-novel-therapy-for-hemophagocytic-lymphohistiocytosis-hlh/) - Principal Invesigator: Dr. Kim Nichols St. Jude Children's Research Hospital Memphis, TN Date of Award: December 2022 Amount of Award: $51,000 (Founder's Grant and Toughill Prize) Layperson Summary: Hemophagocytic lymphohistiocytosis (HLH) is a rare and severe group of diseases affecting the immune system in which patients experience excessive build-up of activated white blood cells within
- [A Study of the Spectrum of Visual Function and Choroidal Structure in Patients with Histiocytosis](https://histio.j2test.com/grants/spectrum-of-visual-function/) - Principal Investigator: Dr. Jasmine Francis Memorial Sloan Kettering Cancer Center New York City, NY USA Date of Award December 2021 Amount of Award $50,000 Layperson Summary The purpose of this research study is to understand more about how histiocytosis affects the choroid, which is a layer of blood vessels inside the eye.
- [Modeling Langerhans cell Histiocytosis with patient-derived iPSCs](https://histio.j2test.com/grants/modeling-langerhans-cell-histiocytosis-with-patient-derived-ipscs/) - Principal Investigator Dr. Giulio Abagnale St.Anna Children's Cancer Research Institute Vienna, Austria Date of Award December 2021 Amount of Award $50,000 Layperson Summary Langerhans Cell Histiocytosis (LCH) is the most common histiocytic disorder, characterized by lesions in different tissues where malignant CD1a+/CD207+ cells accumulate. LCH is more common in children and high-risk patient may develop
- [Role of the immune checkpoint TIM-3 in the pathogenesis of non-classical HLH](https://histio.j2test.com/grants/role-of-the-immune-checkpoint-tim-3-in-the-pathogenesis-of-non-classical-hlh/) - Principal Investigator Dr. Fernando Sepulveda Imagine Institute Paris, FR Date of Award December 2021 Amount of Award $50,000 Layperson Summary The understanding of the genetic causes and the physiopathological mechanisms underlying HLH is critical for the development of more efficient therapies. The study of animal models of HLH have contributed to our understanding of the
- [Identifying novel CSF Biomarkers for the Diagnosis of Isolated CNS Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/identifying-novel-csf-biomarkers-for-the-diagnosis-of-isolated-cns-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Dr. Sharat Chandra Cincinnati Children's Hospital Medical Center Cincinnati, Ohio USA Date of Award December 2021 Amount of Award $51,000 (Founder's Grant and Toughill Prize) Layperson Summary Primary Hemophagocytic Lymphohistiocytosis (HLH) is an inherited syndrome of excessive inflammation. While involvement of the brain i.e., CNS-HLH is common in primary HLH, a proportion of
- [2020 Grant Cycle](https://histio.j2test.com/grants/2020-grant-cycle/) - Due to COVID-19 slowing down research and hindering access to laboratories in the Spring of 2020, the Histiocytosis Association made the decision to wait to open the grants cycle until later in the year. However, as the year progressed, it became clear that the best course of action was to hold the funds that had
- [Excessive IL-10 Potentiates IL-18 to Cooperatively Drive Severe Secondary HLH/MAS-like Disease and Hyper-inflammaphagocytic Macrophage Polarization in Mouse Models.](https://histio.j2test.com/grants/excessive-il-10-potentiates-il-18-to-cooperatively-drive-severe-secondary-hlh-mas-like-disease-and-hyper-inflammaphagocytic-macrophage-polarization-in-mouse-models/) - Gang Huang Cincinnati Children's Hospital Medical Center, Cincinnati, OH USA
- [Transcriptional dysregulation of myeloid cells with MAP kinase pathway mutations](https://histio.j2test.com/grants/transcriptional-dysregulation-of-myeloid-cells-with-map-kinase-pathway-mutations/) - Matthew Collin Newcastle University, Newcastle upon Tyne, UK
- [Identification of a microRNA expression signature for diagnosis and monitoring of treatment response in Erdheim-Chester disease and its role in disease pathogenesis](https://histio.j2test.com/grants/identification-of-a-microrna-expression-signature-for-diagnosis-and-monitoring-of-treatment-response-in-erdheim-chester-disease-and-its-role-in-disease-pathogenesis/) - Ofer Shpilberg Assuta Medical Centers, Tel-Aviv, Israel
- [Mapping and understanding the heterogeneity of Langerhans cell histiocytosis using single-cell analysis](https://histio.j2test.com/grants/mapping-and-understanding-the-heterogeneity-of-langerhans-cell-histiocytosis-using-single-cell-analysis/) - Florent Ginhoux Singapore Immunology Network (SIgN) / A*STAR, Singapore
- [Use of a Response-Adapted Ruxolitinib-Containing Regimen for the Treatment of Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/use-of-a-response-adapted-ruxolitinib-containing-regimen-for-the-treatment-of-hemophagocytic-lymphohistiocytosis/) - Melissa Hines St Jude Children's Research Hospital, Memphis, TN USA
- [Developmental Hierarchy in LCH](https://histio.j2test.com/grants/developmental-hierarchy-in-lch/) - Principal Investigator Caroline Hutter St. Anna Kinderkrebsforschung Vienna, Austria Date of Award December 2018 Amount of Award $50,000 Layperson Summary The aim of this project is to understand cellular and molecular mechanisms that contribute to LCH pathogenesis. LCH is a heterogeneous disease. The clinical course can be relatively harmless with lesions resolving spontaneously, but it
- [Understanding the role of Epstein Barr virus in Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/understanding-the-role-of-epstein-barr-virus-in-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Claire Shannon-Lowe The University of Birmingham Birmingham, United Kingdom Date of Award December 2018 Amount of Award $49,991 Layperson Summary Epstein Barr virus (EBV) is a common virus, infecting up to 95% of the world’s population and persisting within infected individuals for their lifetime. EBV usually infects young children and most infected individuals do
- [Unbiased profiling of the hemophagocytic lymphohistiocytic syndrome by high-throughput single-cell transcriptomic analysis](https://histio.j2test.com/grants/unbiased-profiling-of-the-hemophagocytic-lymphohistiocytic-syndrome-by-high-throughput-single-cell-transcriptomic-analysis/) - Principal Investigator Fernando Sepulveda INSERM DR Paris 5 Paris, France Date of Award December 2018 Amount of Award $50,000 Layperson Summary The understanding of the molecular and cellular events leading to the occurrence of HLH is critical for the design of more efficient therapies to treat this otherwise life-threatening syndrome. Genetic studies of several HLH patients
- [The mechanisms of cytotoxic granule exocytosis underlying hemophagocytic lymphohistiocytosis](https://histio.j2test.com/grants/the-mechanisms-of-cytotoxic-granule-exocytosis-underlying-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Shuzo Sugita University Health Network Toronto, ON Canada Date of Award December 2018 Amount of Award $50,000 Layperson Summary There are cells in our body that fight diseases, these are known as immune cells and natural killer (NK) cells and CD8+ T cells are two examples of immune cells. They protect us from disease
- [Maintenance of the IT platform of the LCH-IV Treatment Protocol Study (LCH-IVTPS)](https://histio.j2test.com/grants/maintenance-of-the-it-platform-of-the-lch-iv-treatment-protocol-study-lch-ivtps/) - Principal Investigator Milen Minkov CCRI, St. Anna Kinderkrebsforschung Vienna, Austria Date of Award December 2017 Amount of Award $50,000 ($10,000 per year for 5 years) Layperson Summary The LCH-IV Treatment Protocol Study (LCH-IVTPS) is an ambitious research clinical trial aiming to address unsolved clinical issues of primary importance for the patients (e.g. treatment of patients
- [A Study of Advanced Neuroimaging and Cognition in Adults with Histiocytic Disorders](https://histio.j2test.com/grants/a-study-of-advanced-neuroimaging-and-cognition-in-adults-with-histiocytic-disorders/) - Principal Investigator Eli Diamond, M.D. Memorial Sloan Kettering Cancer Center New York, NY USA Date of Award December 2016 Amount of Award $50,000 Layperson Summary The purpose of this research study is to understand more about how histiocytosis affects the brain. There are severe and advanced forms of histiocytic disease (Langerhans and others) in the
- [The use of a newly generated murine model to determine the broad role of STXBP2 in FHL5 pathogenesis](https://histio.j2test.com/grants/the-use-of-a-newly-generated-murine-model-to-determine-the-broad-role-of-stxbp2-in-fhl5-pathogenesis/) - Principal Investigator Fernando Sepulveda, Ph.D. Imagine Institute Paris, France Date of Award December 2016 Amount of Award $50,000 Layperson Summary The understanding of the molecular and cellular events leading to the occurrence of HLH is critical for the design of less toxic and more targeted therapies to treat this otherwise life-threatening syndrome. Studies of animal
- [HIF-1α Signaling is a Central Pathobiologic Mediator of Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/hif-1α-signaling-is-a-central-pathobiologic-mediator-of-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Gang Huang, Ph.D. Children’s Hospital Medical Center Cincinnati, OH USA Date of Award December 2016 Amount of Award $50,000 Layperson Summary HLH is a life-threatening clinical syndrome characterized by hyperactivated immune response and its related pathological damages. HLH is usually triggered by extrinsic reasons such as infection, autoimmune and cancer with or without
- [Genetic Defects in Cytolysis in Patients with Macrophage Activation Syndrome Enrolled in a Clinical Trial to Explore Interleukin-1 Blockage Therapy](https://histio.j2test.com/grants/genetic-defects-in-cytolysis-in-patients-with-macrophage-activation-syndrome-enrolled-in-a-clinical-trial-to-explore-interleukin-1-blockage-therapy/) - Principal Investigator Randy Cron, M.D., Ph.D. University of Alabama at Birmingham Birmingham, AL USA Date of Award December 2016 Amount of Award $50,000 Layperson Summary Macrophage activation syndrome (MAS) is related to a group of disorders called hemophagocytic lymphohistiocytosis (HLH), characterized by overly active white blood cells, including histiocytes. Although the genetic or familial form
- [Innate T cells in Langerhan’s Cell Histiocytosis](https://histio.j2test.com/grants/innate-t-cells-in-langerhans-cell-histiocytosis/) - Principal Investigator Stuart Berzins, Ph.D. Federation University Australia Ballarat, Victoria, Australia Date of Award December 2016 Amount of Award $50,000 Layperson Summary This project studies the role of ‘innate-like T cells’ in Langerhan’s Cell Histiocytosis. Innate like T cells are specialized white blood cells that regulate the immune system to ensure immune responses against pathogens
- [MEK Inhibition in the Therapy of Histiocytic Neoplasms](https://histio.j2test.com/grants/mek-inhibition-in-the-therapy-of-histiocytic-neoplasms/) - Principal Investigator Omar Abdel-Wahab, MD Memorial Sloan Kettering Cancer Center New York, New York USA Date of Award December 2015 Amount of Award $50,000 Layperson Summary Histiocytic diseases are a group of blood disorders that affect both children and adults and can lead to severe disability and death. Until very recently, there were no effective
- [Identification of Molecular Mechanisms Underlying Defective Cytotoxic Lymphocyte Function in Chediak-Higashi Syndrome, a Histiocytic Lysosomal Storage Disorder with Immunodeficiency](https://histio.j2test.com/grants/identification-of-molecular-mechanisms-underlying-defective-cytotoxic-lymphocyte-function-in-chediak-higashi-syndrome-a-histiocytic-lysosomal-storage-disorder-with-immunodeficiency/) - Principal Investigator Konrad Krzewski, PhD National Institute of Allergy and Infectious Diseases, National Institutes of Health Rockville, Maryland USA Date of Award December 2015 Amount of Award $50,000 Layperson Summary Natural Killer (NK) cells belong to a subset of white blood cells that is very important for our organism defense. NK cells have the abilityto
- [Genetic Dissection of the Exocytic Machinery in Cytotoxic Lymphocytes](https://histio.j2test.com/grants/genetic-dissection-of-the-exocytic-machinery-in-cytotoxic-lymphocytes/) - Principal Investigator Matthias Voss, PhD Karolinska Institutet Stockholm, Sweden Date of Award December 2015 Amount of Award $50,000 Layperson Summary The human immune system is equipped with specialized cells that selectively kill virus-infected cells and thus prevent virus spread within the body. In infant patients with familial hemophagocytic lymphohistiocytosis (FHL), a heritable immunodeficiency syndrome,
- [Deciphering the Underlying Molecular Defects in CTL and NK Cell Cytotoxicity in FHL Patients](https://histio.j2test.com/grants/deciphering-the-underlying-molecular-defects-in-ctl-and-nk-cell-cytotoxicity-in-fhl-patients/) - Principal Investigator Claudio Giraudo, PhD The Children's Hospital of Philadelphia University of Pennsylvania Philadelphia, Pennsylvania USA Date of Award December 2015 Amount of Award $50,000 Layperson Summary The immune system utilizes Lymphocytes as the main line of defense to detect and destroy tumor cells. Lymphocytes are a type of white cells that circulate in the
- [The Interplay of NOTCH and MAPK Pathway in LCH](https://histio.j2test.com/grants/the-interplay-of-notch-and-mapk-pathway-in-lch/) - Principal Investigator Raphaela Schwentner, MSc, PhD Children's Cancer Research Institute Vienna, Austria Date of Award December 2015 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare disease that may affect any age group, but its most aggressive form is mainly seen in young children. One intriguing feature of LCH is
- [LCH-IV Clinical Trial – Stratum I Patient Registration Reimbursement for North American Institutions](https://histio.j2test.com/grants/lch-iv-clinical-trial-stratum-i-patient-registration-reimbursement-for-north-american-institutions/) - Principal Investigator Carlos Rodriguez-Galindo, MD St. Jude Children's Research Hospital Memphis, Tennessee USA Date of Award December 2015 Amount of Award $50,000 Layperson Summary Improvements in outcomes for patients with LCH and advances in our understanding of LCH biology have been limited by the rarity of the disease and the lack of coordinated efforts
- [Gaining Insights into the Mechanisms of Lymphocyte Cytotoxicity Underlying Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/gaining-insights-into-the-mechanisms-of-lymphocyte-cytotoxicity-underlying-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Yenan Bryceson, PhD Karolinska Institutet, Stockholm, Sweden Date of Award December 2014 Amount of Award $50,000 Layperson Summary Familial hemophagocytic lymphohistiocytosis (FHL) is a devastating inherited disease affecting mainly infants and young children. It causes fever, enlarged liver and spleen, as well as reduced numbers of white blood cells. Without treatment FHL is
- [Comprehensive mRNA/miRNAs Expression Analysis in Familial Hemophagocytic Lymphohistiocytosis Type 2, Using the C57BL/6-Prf1tm1Sdz/J Murine Model](https://histio.j2test.com/grants/comprehensive-mrna-mirnas-expression-analysis-in-familial-hemophagocytic-lymphohistiocytosis-type-2-using-the-c57bl-6-prf1tm1sdz-j-murine-model/) - Principal Investigator Janos Sumegi, MD, DSc, PhD Cincinnati Children's Hospital Medical Center, Cincinnati, OH USA Date of Award December 2014 Amount of Award $50,000 Layperson Summary This project addresses several issues of central importance of hemophagocytic lymphohistiocytosis a rare (1 per million person), life threatening “immunodeficiency condition” with severe hyperinflammation and hemophagocytosis caused byuncontrolled proliferation
- [Accumulation of Heterozygous Mutations on HLH Pathogenesis](https://histio.j2test.com/grants/accumulation-of-heterozygous-mutations-on-hlh-pathogenesis/) - Principal Investigator Fernando Sepulveda, PhD Imagine Institute, Paris, France Date of Award December 2014 Amount of Award $50,000 Layperson Summary Familial forms of hemophagocytic lymphohistiocytic syndrome (HLH) are severe and potentially life-threatening immune disorder characterized by impairment in the cytotoxic activity of lymphocytes and natural killer (NK) cells. We and others have established that Familial
- [Novel Animal Model for LCH](https://histio.j2test.com/grants/novel-animal-model-for-lch/) - Principal Investigator Sergio Lira, MD, PhD Icahn School of Medicine at Mount Sinai, New York, New York USA Date of Award December 2014 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a disease characterized by the abnormal proliferation of leukocytes in the liver, lung and spleen. Approximately 60% of the patients with
- [Exploring CD8+ T cell-LCH-cell Interactions in Langerhans cell histiocytosis: A Three Center Study](https://histio.j2test.com/grants/exploring-cd8-t-cell-lch-cell-interactions-in-langerhans-cell-histiocytosis-a-three-center-study/) - Principal Investigator Astrid van Halteren, PhD Leiden University Medical Center, Leiden, Netherlands Date of Award December 2014 Amount of Award $49,691 Layperson Summary Langerhans Cell Histiocytosis (LCH) is a rare disease which typically presents itself as (chronically) inflamed tissue abnormalities which develop at one or several locations. While the majority of patients is successfully treated,
- [Janus Kinase Inhibition as a Novel Treatment for Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/janus-kinase-inhibition-as-a-novel-treatment-for-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Kim E. Nichols, MD University of Pennsylvania Perelman School of Medicine The Children's Hospital of Philadelphia - Philadelphia, Pennsylvania USA Date of Award December 2013 Amount of Award $50,000 Layperson Summary Hemophagocytic lymphohistiocytosis (HLH) is a rare and poorly understood group of diseases affecting the immune system. Children with HLH experience excessive build-up
- [Gene Therapy in a Mouse Model of Virus-triggered X-linked Lymphoproliferative Disease (XLP1): Control of Infection and Disease Progression](https://histio.j2test.com/grants/gene-therapy-in-a-mouse-model-of-virus-triggered-x-linked-lymphoproliferative-disease-xlp1-control-of-infection-and-disease-progression/) - Principal Investigator Peter Aichele, PhD University Medical Center Freiburg, University of Freiburg - Freiburg, Germany Date of Award December 2013 Amount of Award $49,920 Layperson Summary XLP1 (X-linked lymphoproliferative disease) is an immunodeficiency based on genetic defects in the SAP molecule. XLP patients suffer from a variety of clinical manifestations with the most prominent being
- [Unraveling the Pathophysiological Role of the BRAFV600E Mutation in Langerhans Cell Histiocytosis (LCH) and its Therapeutical Implications with Murine Models of High-Risk LCH](https://histio.j2test.com/grants/unraveling-the-pathophysiological-role-of-the-brafv600e-mutation-in-langerhans-cell-histiocytosis-lch-and-its-therapeutical-implications-with-murine-models-of-high-risk-lch/) - Principal Investigator Miriam Merad, MD, PhD Icahn School of Medicine at Mount Sinai - New York, New York USA Date of Award December 2013 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a poorly understood disease that affects mostly children. The disease results from the accumulation of cells called dendritic cells that
- [Histiocyte Society Clinical Trials Database System LCH-IV Treatment Protocol Study](https://histio.j2test.com/grants/histiocyte-society-clinical-trials-database-system-lch-iv-treatment-protocol-study-4/) - Project Administrators Histiocyte Society Executive Board LCH Study Reference Center – Vienna, Austria Date of Award December 2013 Amount of Award $50,000 Layperson Summary The Histiocyte Society Clinical Trials Database System (HSCTDS)—an online, remote data entry system—will be built under the supervision of the Histiocyte Society. The company creating and hosting the system, Austrian Research
- [Dysregulation of Dendritic Cell Development in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/dysregulation-of-dendritic-cell-development-in-langerhans-cell-histiocytosis/) - Principal Investigator Matthew Collin, MD Newcastle University - Newcastle upon Tyne, United Kingdom Date of Award December 2013 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis is caused by an abnormal type of dendritic cell known as the LCH cell. About two-thirds of patients have a mutation in BRAF, a gene that controls the
- [M1 Versus M2 Polarization of the Hemophagocyte: Insight into Biologic Function](https://histio.j2test.com/grants/m1-versus-m2-polarization-of-the-hemophagocyte-insight-into-biologic-function-2/) - Principal Investigator Edward Behrens MD The Children's Hospital of Philadelphia - Philadelphia, Pennsylvania USA Date of Award December 2012 Amount of Award $50,000 Layperson Summary Hemophagocytic syndromes are a rapidly fatal subset of histiocytic disorders that occur in a wide variety of clinical scenarios in both children and adults. As the name implies, they are
- [Improving Diagnostics of and Gaining Mechanistic Insights into Defects in Lymphocyte Cytotoxicity Underlying HLH](https://histio.j2test.com/grants/improving-diagnostics-of-and-gaining-mechanistic-insights-into-defects-in-lymphocyte-cytotoxicity-underlying-hlh-2/) - Continuation of study funded in 2011 Principal Investigator Yenan Bryceson PhD Karolinska Institutet Center for Infectious Medicine - Stockholm, Sweden Date of Award December 2012 Amount of Award $50,000 Layperson Summary Familial hemophagocytic lymphohistiocytosis (FHL) is a devastating inherited disease affecting mainly infants and young children. It causes fever, enlarged liver and spleen, as well
- [Focused Screening of Novel Therapies for HLH Using an Animal Model](https://histio.j2test.com/grants/focused-screening-of-novel-therapies-for-hlh-using-an-animal-model-2/) - Principal Investigator Michael Jordan MD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award December 2012 Amount of Award $50,000 Layperson Summary In recent years significant progress has been made in the treatment of hemophagocytic lymphohistiocytosis (HLH). However, outcomes for children with HLH are often still quite poor. Many children fail to
- [Whole Exome Sequencing of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/whole-exome-sequencing-of-langerhans-cell-histiocytosis/) - Principal Investigator and Co-Investigator Barrett Rollins MD, PhD (PI) Dana-Farber Cancer Institute - Boston, Massachusetts USA Astrid G.S. van Halteren PhD (CI) Leiden University Medical Center - Leiden, The Netherlands Date of Award December 2012 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a potentially devastating disease. Although many patients respond to
- [Research Infrastructure for Clinical and Translational Research in Langerhans Cell Histiocytosis (LCH)](https://histio.j2test.com/grants/research-infrastructure-for-clinical-and-translational-research-in-langerhans-cell-histiocytosis-lch/) - Principal Investigator Carlos Rodriguez-Galindo MD Dana-Farber Cancer Institute - Boston, Massachusetts USA Date of Award December 2012 Amount of Award $50,000 Layperson Summary Langerhans Cell Histiocytosis (LCH) is a poorly understood disease with variable presentation. Studies conducted by the Histiocyte Society have helped to identify prognostic factors, risk stratification principles, and the best chemotherapeutic regimens.
- [M1 Versus M2 Polarization of the Hemophagocyte: Insight into Biologic Function](https://histio.j2test.com/grants/m1-versus-m2-polarization-of-the-hemophagocyte-insight-into-biologic-function/) - Principal Investigator Edward Behrens MD The Children's Hospital of Philadelphia - Philadelphia, Pennsylvania USA Date of Award December 2012 Amount of Award $50,000 Layperson Summary Hemophagocytic syndromes are a rapidly fatal subset of histiocytic disorders that occur in a wide variety of clinical scenarios in both children and adults. As the name implies, they are
- [Improving Diagnostics of and Gaining Mechanistic Insights into Defects in Lymphocyte Cytotoxicity Underlying HLH](https://histio.j2test.com/grants/improving-diagnostics-of-and-gaining-mechanistic-insights-into-defects-in-lymphocyte-cytotoxicity-underlying-hlh/) - Continuation of study funded in 2011 Principal Investigator Yenan Bryceson PhD Karolinska Institutet Center for Infectious Medicine - Stockholm, Sweden Date of Award December 2012 Amount of Award $50,000 Layperson Summary Familial hemophagocytic lymphohistiocytosis (FHL) is a devastating inherited disease affecting mainly infants and young children. It causes fever, enlarged liver and spleen, as well
- [Histiocyte Society Clinical Trials Database System LCH-IV Treatment Protocol Study](https://histio.j2test.com/grants/histiocyte-society-clinical-trials-database-system-lch-iv-treatment-protocol-study-3/) - Project Administrators Histiocyte Society Executive Board LCH Study Reference Center – Vienna, Austria Date of Award December 2012 Amount of Award $9,720 Layperson Summary The Histiocyte Society Clinical Trials Database System (HSCTDS)—an online, remote data entry system—will be built under the supervision of the Histiocyte Society. The company creating and hosting the system, Austrian Research
- [Focused Screening of Novel Therapies for HLH Using an Animal Model](https://histio.j2test.com/grants/focused-screening-of-novel-therapies-for-hlh-using-an-animal-model/) - Principal Investigator Michael Jordan MD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award December 2012 Amount of Award $50,000 Layperson Summary In recent years significant progress has been made in the treatment of hemophagocytic lymphohistiocytosis (HLH). However, outcomes for children with HLH are often still quite poor. Many children fail to
- [Analysis of Jagged2 Signaling in Langerahans Cell Histiocytosis](https://histio.j2test.com/grants/analysis-of-jagged2-signaling-in-langerahans-cell-histiocytosis/) - Principal Investigator Caroline Hutter MD, PhD Children's Cancer Resarch Institute/St. Anna Kinderspital - Vienna, Austria Date of Award December 2012 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis is a disease of unknown origin, characterized by accumulations of histiocytes in various organs. In this project we aim to enable new, targeted approaches to treatment
- [International Rare Histiocytic Disorders Registry](https://histio.j2test.com/grants/international-rare-histiocytic-disorders-registry/) - Principal Investigator Oussama Abla MD The Hospital for Sick Children - Toronto, Ontario, Canada Date of Award December 2011 Amount of Award $20,000 Layperson Summary The rare histiocytic disorders (RHD), also known as the non-Langerhans cell histiocytoses, are a diverse group of disorders characterized by the accumulation of histiocytes that do not meet the citeria
- [Perforin Gene Transfer into Human Cytotoxic Lymphocytes](https://histio.j2test.com/grants/perforin-gene-transfer-into-human-cytotoxic-lymphocytes/) - Principal Investigator Kimberly Risma, MD, PhD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award December 2011 Amount of Award $50,000 Layperson Summary The immune system utilizes white blood cells to kill virally-infected cells and tumor cells by cells called natural killer cells and killer T cells. These cells secrete two proteins
- [Mechanistic Studies of Defects in Lymphocyte Cytotoxicity Underlying HLH](https://histio.j2test.com/grants/mechanistic-studies-of-defects-in-lymphocyte-cytotoxicity-underlying-hlh-2/) - Principal Investigator Yenan Bryceson PhD Karolinska Institutet Center for Infectious Medicine - Stockholm, Sweden Date of Award December 2011 Amount of Award $50,000 Layperson Summary Familial hemophagocytic lymphohistiocytosis (FHL) is a devastating inherited disease affecting mainly infants and young children. It causes fever, enlarged liver and spleen, as well as reduced numbers of white blood
- [Biomarkers in Primary and Secondary Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/biomarkers-in-primary-and-secondary-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Janos Sumegi MD, PhD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award December 2011 Amount of Award $50,000 Layperson Summary Familial Hemophagocytic Lymphohistiocytosis (HLH) is almost universally fatal unless aggressively treated soon after diagnosis, and corrected with allogeneic bone marrow transplantation. All forms of familial HLH likely result from
- [Histiocyte Society Clinical Trials Database System LCH-IV Treatment Protocol Study](https://histio.j2test.com/grants/histiocyte-society-clinical-trials-database-system-lch-iv-treatment-protocol-study-2/) - Project Administrators Histiocyte Society Executive Board LCH Study Reference Center – Vienna, Austria Date of Award December 2011 Amount of Award $9,245 Layperson Summary The Histiocyte Society Clinical Trials Database System (HSCTDS)—an online, remote data entry system—will be built under the supervision of the Histiocyte Society. The company creating and hosting the system, Austrian Research
- [BRAF V600E-Drive Mouse Model of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/braf-v600e-drive-mouse-model-of-langerhans-cell-histiocytosis/) - Principal Investigator Gayane Badalian Very Dana-Farber Cancer Institute - Boston, Massachusetts USA Date of Award December 2011 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare disease that mainly affects children. Cells of the immune system, called Langerhans cells (LCs), accumulate in various organs and cause damage, in severe cases even
- [Proteolytic Maturation of Perforin: Determining the Requirements for Cytotoxic Function](https://histio.j2test.com/grants/proteolytic-maturation-of-perforin-determining-the-requirements-for-cytotoxic-function-2/) - Principal Investigator Kimberly Risma MD, PhD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award December 2010 Amount of Award $47,500 Layperson Summary The immune system utilizes killer lymphocytes to eliminate virally-infected cells and tumor cells from the body by secreting two proteins that work together to eliminate abnormal cells: perforin and
- [Mechanistic Studies of Defects in Lymphocyte Cytotoxicity Underlying HLH](https://histio.j2test.com/grants/mechanistic-studies-of-defects-in-lymphocyte-cytotoxicity-underlying-hlh/) - Principal Investigator Yenan Bryceson, PhD Center for Infectious Medicine - Stockholm, Sweden Date of Award December 2010 Amount of Award $47,500 Layperson Summary Familial hemophagocytic lymphohistiocytosis (FHL) is a devastating inherited disease affecting mainly infants and young children. It causes fever, enlarged liver and spleen, as well as reduced numbers of white blood cells. Without
- [Hybrid ImmunoTherapy (ATG/Dexamethasone/Etoposide) for Hemophagocytic Lymphohistiocytosis: The HIT-HLH trial](https://histio.j2test.com/grants/hybrid-immunotherapy-atg-dexamethasone-etoposide-for-hemophagocytic-lymphohistiocytosis-the-hit-hlh-trial/) - Principal Investigator Michael Jordan, MD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award December 2010 Amount of Award $47,500 Layperson Summary In recent years significant progress has been made in the treatment of hemophagocytic lymphohistiocytosis (HLH). However, outcomes for children with HLH are often still quite poor. Many children fail to
- [Gene-Expression Profiling of Peripheral Blood Mononuclear Cells in Memophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/gene-expression-profiling-of-peripheral-blood-mononuclear-cells-in-memophagocytic-lymphohistiocytosis/) - Principal Investigator Janos Sumegi MD DSc PhD Cincinnati Children’s Hospital Medical Center – Cincinnati, Ohio USA Date of Award December 2010 Amount of Award $47,500 Layperson Summary Familial Hemophagocytic Lymphohistiocytosis (HLH) is almost universally fatal unless aggressively treated soon after diagnosis, and corrected with allogeneic bone marrow transplantation. All forms of familial HLH likely result
- [The Role of BRAF V600E in the Pathogenesis of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/the-role-of-braf-v600e-in-the-pathogenesis-of-langerhans-cell-histiocytosis/) - Principal Investigator Gayane Badalian Very Dana-Farber Cancer Institute – Boston, Massachusetts USA Date of Award December 2010 Amount of Award $47,500 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare disease that mainly affects children. Cells of the immune system, called Langerhans cells (LCs), accumulate in various organs and causing damage and, in severe cases,
- [Identifying Familial Associations in Langerhans Cell Histiocytosis Using the Utah Population Database](https://histio.j2test.com/grants/identifying-familial-associations-in-langerhans-cell-histiocytosis-using-the-utah-population-database/) - Principal Investigator Mark Fluchel, MD Primary Children’s Hospital – Salt Lake City, Utah USA Date of Award December 2010 Amount of Award $15,150 Layperson Summary Langerhans Cell Histiocytosis (LCH) is a challenging and poorly understood disease characterized by a malfunctioning immune system, uncontrolled proliferation, and accumulation of Langerhans cells in normal tissues. LCH is notable
- [Histiocyte Society Clinical Trials Database System LCH-IV Treatment Protocol Study](https://histio.j2test.com/grants/histiocyte-society-clinical-trials-database-system-lch-iv-treatment-protocol-study/) - Project Administrators Histiocyte Society Executive Board LCH Study Reference Center – Vienna, Austria Date of Award December 2010 Amount of Award $9,400 Layperson Summary The Histiocyte Society Clinical Trials Database System (HSCTDS)—an online, remote data entry system—will be built under the supervision of the Histiocyte Society. The company creating and hosting the system, Austrian Research
- [Gene Expression Strategy to Identifiy the Cell of Origin in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/gene-expression-strategy-to-identifiy-the-cell-of-origin-in-langerhans-cell-histiocytosis/) - Principal Investigator Carl E. Allen Texas Children’s Hospital – Houston, Texas USA Date of Award December 2010 Amount of Award $47,500 Layperson Summary Background: Langerhans Cell Histiocytosis (LCH) is a potentially fatal disease characterized by invasive tumors infiltrated with pathologic dendritic cells and activated T cells. Current models of LCH suggest that LCH arises from
- [Flow Cytometric and Secretomic Analysis of LCH Lesions](https://histio.j2test.com/grants/flow-cytometric-and-secretomic-analysis-of-lch-lesions/) - Principal Investigator Matthew Collin Institute of Cellular Medicine – Newcastle upon Tyne UK Date of Award December 2010 Amount of Award $47,500 Layperson Summary The title of this project is “Flow Cytometric and Secretomic Analysis of LCH Lesions.” Langerhans cell histiocytosis (LCH) is a rare but sometimes fatal disorder of unknown cause. The lesions of
- [Exploring Coexisting Maternal Microchimeric Cells and Host T-cells in LCH Lesions](https://histio.j2test.com/grants/exploring-coexisting-maternal-microchimeric-cells-and-host-t-cells-in-lch-lesions/) - Principal Investigators A.G.S. van Halteren PhD and R. Maarten Egeler MD, PhD Leiden University Medical Center - Leiden, The Netherlands Date of Award December 2009 Amount of Award $49,449 Layperson Summary Langerhans cell histiocytosis is a rare disease with a thus far unknown cause. While some patients need rigorous treatment, others require minimal treatment or
- [Assesment of PTPN6 (SHP-1) in Langerhans Cell Line](https://histio.j2test.com/grants/assesment-of-ptpn6-shp-1-in-langerhans-cell-line/) - Principal Investigators Ichiro Murakami MD, PhD and Takashi Oka PhD Tottori University - Yonago-shi, Japan Date of Award November 2009 Amount of Award $50,000 Layperson Summary Phosphatases work as brakes in cell proliferation. Kinases work as accelerators. Over-expression of kinases or down-regulation of phosphatases are relevant for proliferative disorders. We presented on the strange phenomenon
- [A Transcriptome Analysis of the Monocytes in Erdheim-Chester Disease](https://histio.j2test.com/grants/a-transcriptome-analysis-of-the-monocytes-in-erdheim-chester-disease/) - Principal Investigator Julien Haroche MD, PhD Hôpitaux de Paris, and Université - Paris, France Date of Award November 2009 Amount of Award $50,000 Layperson Summary Erdheim-Chester disease (ECD) is a rare non-Langerhans cell histiocytosis first described in 1930. By now, approximately 350 cases have been reported in the world literature. ECD is a multi-organ disease
- [Biomarker Profiles in Hemophagocytic Diseases: A Systems Biology Approach](https://histio.j2test.com/grants/biomarker-profiles-in-hemophagocytic-diseases-a-systems-biology-approach-2/) - Principal Investigator E. Marion Schneider PhD Universitätsklinikum Ulm - Ulm, Germany Date of Award November 2009 Amount of Award $36,680 Layperson Summary The current approach aiming at the identification of Biomarker profiles in 1) HLH and in 2) LCH aims at the identification of unique marker combinations resulting in a high specificity and high sensitivity
- [Proteolytic Maturation of Perforin: Determining the Requirements for Cytotoxic Function](https://histio.j2test.com/grants/proteolytic-maturation-of-perforin-determining-the-requirements-for-cytotoxic-function/) - Principal Investigator Kimberly Risma MD, PhD Cincinnati Children’s Hospital Medical Center - Cincinnati, OH USA Date of Award November 2009 Amount of Award $50,000 Layperson Summary The immune system utilizes killer lymphocytes to eliminate virally-infected cells and tumor cells from the body by secreting two proteins that work together to eliminate abnormal cells: perforin and
- [Biomarker Profiles in Hemophagocytic Diseases: A Systems Biology Approach](https://histio.j2test.com/grants/biomarker-profiles-in-hemophagocytic-diseases-a-systems-biology-approach/) - Principal Investigator E. Marion Schneider PhD Universitätsklinikum Ulm - Ulm, Germany Date of Award November 2009 Amount of Award $36,680 Layperson Summary The current approach aiming at the identification of Biomarker profiles in 1) HLH and in 2) LCH aims at the identification of unique marker combinations resulting in a high specificity and high sensitivity
- [Osteopontin Expression and Function in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/osteopontin-expression-and-function-in-langerhans-cell-histiocytosis/) - Principal Investigator and Co-Investigators Carl E. Allen MD, PhD (PI); Tricia L. Peters MD, MS; Kenneth L. McClain MD, PhD Baylor College of Medicine - Houston, Texas USA Date of Award November 2009 Amount of Award $50,000 Layperson Summary Background: Langerhans Cell Histiocytosis (LCH) is a rare but potentially fatal disease in which the cause
- [Myeloid Dendritic Cell Development in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/myeloid-dendritic-cell-development-in-langerhans-cell-histiocytosis/) - Principal Investigator and Co-Investigators Carl E. Allen MD, PhD (PI); Kenneth L. McClain MD, PhD; Chris Man Tsz-Kwong PhD Baylor College of Medicine - Houston, Texas USA Date of Award November 2009 Amount of Award $50,000 Layperson Summary Background: Langerhans Cell Histiocytosis (LCH) is a potentially fatal disease characterized by invasive tumors infiltrated with pathologic
- [Revisiting the Candidate Regions for Familial Hemophagocytic Lymphohistiocytosis (FHLH): Loss-of-Function-Screening Search for the Missing Disease Causing Genes](https://histio.j2test.com/grants/revisiting-the-candidate-regions-for-familial-hemophagocytic-lymphohistiocytosis-fhlh-loss-of-function-screening-search-for-the-missing-disease-causing-genes/) - Principal Investigator Janos Sumegi MD, PhD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Familial Hemophagocytic Lymphohistiocytosis (FHLH) is almost universally fatal unless aggressively treated soon after diagnosis, and corrected with allogeneic bone marrow transplantation. All forms of FHLH likely result from genetic
- [Proteolytic Maturation of Perforin: Determining the Requirements for Cytotoxic Function in Patients with Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/proteolytic-maturation-of-perforin-determining-the-requirements-for-cytotoxic-function-in-patients-with-hemophagocytic-lymphohistiocytosis-2/) - Principal Investigator Kimberly Risma MD, PhD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Cytotoxic T-cells (CTL) and natural killer (NK) cells contain specialized cell compartments, called secretory granules, which release their contents upon contact with an abnormal cell in the body, such
- [Proteolytic Maturation of Perforin: Determining the Requirements for Cytotoxic Function in Patients with Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/proteolytic-maturation-of-perforin-determining-the-requirements-for-cytotoxic-function-in-patients-with-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Kimberly Risma MD, PhD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Cytotoxic T-cells (CTL) and natural killer (NK) cells contain specialized cell compartments, called secretory granules, which release their contents upon contact with an abnormal cell in the body, such
- [The Pathogenesis of XLP Due to XIAP Deficiency](https://histio.j2test.com/grants/the-pathogenesis-of-xlp-due-to-xiap-deficiency/) - Principal Investigator and Co-Investigators Rebecca A. Marsh MD (PI); Jack J. H. Bleesing MD, PhD; Alexandra Filipovich MD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary The disease X-linked lymphoproliferative disease (XLP) can be caused by mutations in a gene called BIRC4. Patients
- [Mechanisms of Interferon Gamma-Induced Hemophagocytosis](https://histio.j2test.com/grants/mechanisms-of-interferon-gamma-induced-hemophagocytosis/) - Principal Investigator Michael Jordan MD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Despite excellent progress over the last decade, too many patients still die from hemophagocytic lymphohistiocytosis (HLH). In order to improve the outcome for patients with HLH, we need to develop
- [Interrogating Disease Mechanisms in a Novel Mouse Model of Hemophagocytosis](https://histio.j2test.com/grants/interrogating-disease-mechanisms-in-a-novel-mouse-model-of-hemophagocytosis/) - Principal Investigator Michelle Hermiston MD, PhD University of California, San Francisco - San Francisco, California USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Hemophagocytic syndromes, including hemophagocytic lymphohistiocytosis (HLH) and macrophage activation syndrome (MAS), encompass a spectrum of life-threatening disorders characterized by severe inflammation. The mechanistic basis for these syndromes remains
- [Origin of the LCH Cell](https://histio.j2test.com/grants/origin-of-the-lch-cell/) - Principal Investigator and Co-Investigators Miriam Merad MD, PhD (PI); Matthew Collin MD; Kenneth McClain MD, PhD; Carl Allen MD, PhD Mount Sinai School of Medicine - New York, New York USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare but sometimes fatal disorder of unknown
- [Knock-In Mouse Model Mimicking Abnormal Langerhans Cell Trafficking in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/knock-in-mouse-model-mimicking-abnormal-langerhans-cell-trafficking-in-langerhans-cell-histiocytosis/) - Principal Investigator Barrett J. Rollins MD, PhD Dana-Farber Cancer Institute, Harvard Medical School - Boston, Massachusetts USA Date of Award September 2008 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare disease that mainly affects children. Cells of the immune system, called Langerhans cells (LCs), accumulate in various organs and cause
- [Accumulation of Misguided Lymphocytes and Dendritic Cells: A New Model for LCH](https://histio.j2test.com/grants/accumulation-of-misguided-lymphocytes-and-dendritic-cells-a-new-model-for-lch/) - Principal Investigator and Co-Investigator Carl E. Allen MD, PhD (PI) and Kenneth L. McClain MD, PhD Texas Children’s Hospital/Baylor College of Medicine - Houston, Texas USA Date of Award September 2008 Amount of Award $25,000 This study was also supported by the Histiocytosis Association of Canada. Layperson Summary Background: Langerhans Cell Histiocytosis (LCH) is a
- [Investigations into the Clinical and Molecular Pathogenesis of XIAP Deficiency](https://histio.j2test.com/grants/investigations-into-the-clinical-and-molecular-pathogenesis-of-xiap-deficiency/) - Principal Investigator and Co-Investigators Rebecca Marsh MD (PI); Jack J. H. Bleesing MD, PhD; Kimberly Risma MD, PhD; Lisa Filipovich MD Cincinnati Children's Hospital Medical Center – Cincinnati, Ohio USA Date of Award December 2007 Amount of Award $48,500 Layperson Summary Primary Hemophagocytic Lymphohistiocytosis (HLH) is a rare, life-threatening disease typically caused by defects in
- [A Transgenic Mouse Model Mimicking Abnormal Langerhans Cell Trafficking in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/a-transgenic-mouse-model-mimicking-abnormal-langerhans-cell-trafficking-in-langerhans-cell-histiocytosis/) - Principal Investigator and Co-Investigator Barrett J. Rollins MD, PhD (PI); Barbara Brandner PhD; Gayane Badalian MD, PhD Dana-Farber Cancer Institute, Harvard Medical School Boston, Massachusetts USA Date of Award December 2007 Amount of Award $50,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare disease that mainly affects children. Cells of the immune system, called
- [Role of the Granzyme Inhibitor Proteinase Inhibitor-9 (PI-9) in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/role-of-the-granzyme-inhibitor-proteinase-inhibitor-9-pi-9-in-langerhans-cell-histiocytosis/) - Principal Investigator Carl Friedrich Classen MD University Childrens Hospital Rostock - Duisburg, Germany Date of Award December 2007 Amount of Award $25,000 Layperson Summary Langerhans cell histiocytosis (LCH) is a disease characterized by irregular proliferation of Langerhans cells - a subgroup of dendritic cells (DC) - with a broad spectrum of clinical manifestations, ranging from
- [Mechanisms of IL-17A-Dependent Dendritic Cell Long-Term Survival and Fusion in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/mechanisms-of-il-17a-dependent-dendritic-cell-long-term-survival-and-fusion-in-langerhans-cell-histiocytosis/) - Principal Investigator Christine Delprat MD, PhD INSERM – Lyon, France Date of Award December 2007 Amount of Award $50,000 Total amount paid by the Histiocytosis Association of Canada Layperson Summary Langerhans cell histiocytosis (LCH) may affect any age group, from the newborn to the elderly, but clinical features, pathogenesis, and treatment outcome derives from the
- [Lymphocyte Trafficking in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/lymphocyte-trafficking-in-langerhans-cell-histiocytosis/) - Principal Investigator and Co-Investigator Kenneth McClain MD, PhD (PI) and Carl Allen MD, PhD Texas Children’s Cancer Center/Hematology Service - Houston, Texas USA Date of Award December 2007 Amount of Award $50,000 Layperson Summary Langerhans Cell Histiocytosis is a potentially fatal disease thought to be caused by uncontrolled proliferation of Langerhans cells. Typically, Langerhans cells
- [Ganglioside-Induced Defective Granule Exocytosis-Mediated Cytotoxicity in Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/ganglioside-induced-defective-granule-exocytosis-mediated-cytotoxicity-in-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Sasa Radoja PhD Children's National Medical Center – Washington, District of Columbia USA Date of Award December 2007 Amount of Award $50,000 Layperson Summary Hemophagocytic lymphohistiocytosis (HLH) is a life threatening immune disorder that usually presents during infancy or early childhood. Dysfunction of a particular type of immune cells, called “killer cells” is
- [Biomarker Monitoring of Central Nervous System Disease in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/biomarker-monitoring-of-central-nervous-system-disease-in-langerhans-cell-histiocytosis/) - Principal Investigator Jan-Inge Henter MD, PhD Karolinska Institutet – Stockholm, Sweden Date of Award December 2007 Amount of Award $50,000 Total amount paid by the Histiocytosis Association of Canada Layperson Summary Problem formulation: Langerhans cell histiocytosis (LCH) is a disease of unknown cause and a remarkably variable clinical course. It may present as a discrete
- [The Mechanism of Regulation of Dendritic Cell Differentiation by Adenosine](https://histio.j2test.com/grants/the-mechanism-of-regulation-of-dendritic-cell-differentiation-by-adenosine/) - Principal Investigator Mikhail M. Dikov PhD Vanderbilt University Medical Center - Nashville, Tennessee USA Date of Award September 2006 Amount of Award $45,000 Layperson Summary The optimal therapeutic strategies for multisystem Langerhans cell histiocytosis (LCH) remain to be defined. Advances in LCH immunology suggest that aberrant differentiation of dendritic cells (DCs) might underlie the defective
- [Structure/Function Relationships in the MUNC13-4 Protein: Molecular Consequences of Familial Hemophagocytic Lymphohistiocytosis Associated Mutations](https://histio.j2test.com/grants/structure-function-relationships-in-the-munc13-4-protein-molecular-consequences-of-familial-hemophagocytic-lymphohistiocytosis-associated-mutations/) - Principal Investigator Janos Sumegi MD Cincinnati Children's Hospital Medical Center - Cincinnati, Ohio USA Date of Award September 2006 Amount of Award $40,500 Layperson Summary Hemophagocytic lymphohistiocytosis is a rare life-threatening immune disorder, often referred to as "orphan", characterized by fever, hepatosplenomegaly, and pancytopenia, hypertriglyceridemia, hypofibrinogenemia and, frequently seizures. HLH has been categorized, clinically as
- [Homozygosity Mapping to Reveal Novel Genetic Defects in Patients with Familial Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/homozygosity-mapping-to-reveal-novel-genetic-defects-in-patients-with-familial-hemophagocytic-lymphohistiocytosis/) - Principal Investigator Maurizio Aricò MD Osoedale dei Bambini "G. Di Cristina" - Palermo, Italy Date of Award September 2006 Amount of Award $45,000 Layperson Summary FHL is a rare, familial disease which is usually fatal in early infancy. Delayed onset is being increasingly recognized and the disease has been recently diagnosed also in young adults.
- [Homozygozity Mapping for Identification of a Novel Genetic Defect in Patients with Familial Hemphogocytic Lymphohistiocytosis](https://histio.j2test.com/grants/homozygozity-mapping-for-identification-of-a-novel-genetic-defect-in-patients-with-familial-hemphogocytic-lymphohistiocytosis/) - Principal Investigator Udo zur Stadt MD University Medical Center Hamburg Eppendorf - Hamburg, Germany Date of Award September 2006 Amount of Award $44,100 Layperson Summary Despite the fact that FHL is a very rare disease, the identification of underlying mutations is highly relevant since affected persons have a usually fatal outcome if the disease is
- [Genetic Studies on the Pathogenesis of FHL](https://histio.j2test.com/grants/genetic-studies-on-the-pathogenesis-of-fhl/) - Principal Investigator Magnus Nordenskjöld MD, PhD Karolinska University Hospital - Stockholm, Sweden Date of Award September 2006 Amount of Award $45,000 Layperson Summary Familial hemophagocytic lymphohistiocytosis (FHL) is a devastating disease affecting mainly infants and young children. It causes fever, enlarged liver and spleen, as well as depleted blood counts. Without treatment, FHL is invariably
- [Langerhans Cell and Dendritic Cell Homeostasis in Human Skin](https://histio.j2test.com/grants/langerhans-cell-and-dendritic-cell-homeostasis-in-human-skin/) - Principle Investigator Matthew Collin MD Newcastle University - Newcastle upon Tyne, United Kingdom Date of Award September 2006 Amount of Award $44,960 Layperson Summary Langerhans cell histiocytosis (LCH) is a rare but sometimes fatal disorder of unknown cause. The Langerhans cell (LC) normally inhabits the skin and respiratory system in low numbers and is
- [Genomic Array and Expression Analysis of Frequent Amplifications in CD1a+LCH Cells](https://histio.j2test.com/grants/genomic-array-and-expression-analysis-of-frequent-amplifications-in-cd1alch-cells/) - Principal Investigator Nicola Elizabeth Annels MD Leiden University Medical Center - Leiden, The Netherlands Date of Award September 2006 Amount of Award $45,000 Layperson Summary Langerhans cell histiocytosis is not only a disease of unknown cause but also there is still a lot of controversy about whether this is a malignant disease. Defining what a
- [Cigarette Smoking Promotes Dendritic Cell Survival and Resistance to Apoptosis Through HEME-Oxygenase-1 Dependant Mechanisms](https://histio.j2test.com/grants/cigarette-smoking-promotes-dendritic-cell-survival-and-resistance-to-apoptosis-through-heme-oxygenase-1-dependant-mechanisms/) - Principal Investigator Robert Vassallo MD Mayo Clinic - Rochester, Minnesota USA Date of Award September 2006 Amount of Award $45,000 Layperson Summary Pulmonary LCH is an unusual lung disease that occurs almost exclusively in cigarette smokers. Although the link between smoking and pulmonary LCH is strong, the mechanisms by which smoking may precipitate LCH in
- [Analysis of T-cell Function in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/analysis-of-t-cell-function-in-langerhans-cell-histiocytosis/) - Kenneth L. McClain MD, PhD (PI) and Carl E. Allen MD, PhD Texas Children's Hospital, Baylor College of Medicine - Houston, Texas USA Date of Award September 2006 Amount of Award $45,000 Layperson Summary Langerhans Cell Histiocytosis is a potentially fatal disease characterized by uncontrolled proliferation of a type of cell called a Langerhans Cell.
- [LCH-III Clinical Trials](https://histio.j2test.com/grants/lch-iii-clinical-trials/) - Principle Investigator Nicole Grois MD St. Anna's Children's Hospital - Vienna, Austria Date of Award June 2006 Amount of Award $45,000
- [Identification of Lytic Granule Exocytosis-Related Candidate Genes Involved in Pathogenesis of Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/identification-of-lytic-granule-exocytosis-related-candidate-genes-involved-in-pathogenesis-of-hemophagocytic-lymphohistiocytosis/) - Principal Investigator and Co-Investigator Sasa Radoja PhD (PI) and E. Marion Schneider PhD Children's Research Institute - Washington, District of Columbia USA Date of Award December 2005 Amount of Award $40,000 Layperson Summary Hemophagocytic lymphohistiocytosis (HLH) is a life threatening immune disorder that usually presents during infancy or early childhood. Dysfunction of a
- [Study of Dendritic Cell-Derived Multinucleated Giant Cells in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/study-of-dendritic-cell-derived-multinucleated-giant-cells-in-langerhans-cell-histiocytosis/) - Principal Investigator Christine Servet-Delprat PhD Molecular Immunobiology Clinic; INSERM - Lyon, France Date of Award December 2005 Amount of Award $40,000 Layperson Summary LCH may affect any age group, from the newborn to the elderly, but clinical features, pathogenesis, and treatment outcome derives from the pediatric experience. The incidence for LCH of around 1:200,000 children
- [Genome-Wide Detection of Possible Chromosomal Imbalances in LCH Lesional Cells Using BAC Microarrays](https://histio.j2test.com/grants/genome-wide-detection-of-possible-chromosomal-imbalances-in-lch-lesional-cells-using-bac-microarrays/) - Principal Investigator Nicola Elizabeth Annels MD Leiden University Medical Center; Leiden - The Netherlands Date of Award December 2005 Amount of Award $40,000 Layperson Summary Langerhans cell histiocytosis is not only a disease of unknown cause but also there is still a lot of controversy about whether this is a malignant disease. Defining what
- [Gene Expression in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/gene-expression-in-langerhans-cell-histiocytosis/) - Principal Investigator Kenneth L. McClain MD, PhD Baylor College of Medicine, Texas Children's Cancer Center - Houston, Texas USA Date of Award December 2005 Amount of Award $40,000 Layperson Summary Better therapies for Langerhans cell Histiocytosis cannot be designed until we understand what causes the disease to occur. It is known that several
- [Cigarette Smoking and TSLP in the Pathogenesis of Pulmonary LCH](https://histio.j2test.com/grants/cigarette-smoking-and-tslp-in-the-pathogenesis-of-pulmonary-lch/) - Principal Investigator Robert Vassallo MD Pulmonary and Critical Care Medicine, Mayo Clinic - Rochester, Minnesota USA Date of Award December 2005 Amount of Award $40,000 Layperson Summary Although numerous studies suggest that tobacco smoke causes, or induces pulmonary LCH, the mechanisms by which this happens are not known. Through this application, we will investigate
- [Novel Photoconvertable Florescent Proteins to Trace Hemophagocytes in Whole Blood](https://histio.j2test.com/grants/novel-photoconvertable-florescent-proteins-to-trace-hemophagocytes-in-whole-blood/) - Principle Investigator Marion Schneider PhD University of Ulm - Ulm, Germany Date of Award May 2005 Amount of Award $30,000
- [A New Transgenic Mouse Model for Skin LCH: Probing the Disease Mechanisms](https://histio.j2test.com/grants/a-new-transgenic-mouse-model-for-skin-lch-probing-the-disease-mechanisms/) - Principle Investigator Hans Acha-Orbea PhD University of Lausanne - Epalinges, Switzerland Date of Award May 2005 Amount of Award $40,000
- [Genetic Characterization of Langerhans Cell Differentiation in LCH](https://histio.j2test.com/grants/genetic-characterization-of-langerhans-cell-differentiation-in-lch/) - Principal Investigator Kelvin Lee MD University of Miami School of Medicine - Miami, Florida USA Date of Award May 2005 Amount of Award $40,000
- [Development of a Murine Model for LCH Using Binary Knock-in Mice](https://histio.j2test.com/grants/development-of-a-murine-model-for-lch-using-binary-knock-in-mice/) - Principal Investigator Frederic Geissmann MD, PhD Necker-Enfants Malades Hospital - Paris, France Date of Award May 2005 Amount of Award $20,000 This study was also supported by the Histiocytosis Association of Canada
- [Construction of a Viral Vector Containing the Human Perforin Gene](https://histio.j2test.com/grants/construction-of-a-viral-vector-containing-the-human-perforin-gene/) - Cesare Danesino MD Umana Ed Ereditaria - Pavia, Italy Total Amount of Award: $60,000 (paid over two years) Grant Awarded in: 2002-2004
- [Study of the Genetic Defects Underlying HLH: Investigation of Cellular Abnormalities Associated with Defective NK Cell Function and Resultant Dysregulation of T-cell Populations](https://histio.j2test.com/grants/study-of-the-genetic-defects-underlying-hlh-investigation-of-cellular-abnormalities-associated-with-defective-nk-cell-function-and-resultant-dysregulation-of-t-cell-populations/) - Alexandra Filipovich MD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Total Amount of Award: $60,000 (paid over two years) Total amount paid by the Histiocytosis Association of Canada Grant Awarded in: 2002-2004
- [HLH-94 Clinical Trial](https://histio.j2test.com/grants/hlh-94-clinical-trial/) - Jan-Inge Henter MD, PhD Karolinska Hopital - Stockholm, Sweden Total Amount of Award: $15,000 Grant Awarded in: 2002-2004
- [Animal Model of Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/animal-model-of-hemophagocytic-lymphohistiocytosis/) - Michael Jordan MD Howard Hughes Medical Institute - Chevy Chase, Maryland USA Total Amount of Award: $60,000 (paid over two years) Grant Awarded in: 2002-2004
- [Targeted Imaging and Therapy with Humanized Anti-CD1a Monoclonal Antibody Conjugates for LCH](https://histio.j2test.com/grants/targeted-imaging-and-therapy-with-humanized-anti-cd1a-monoclonal-antibody-conjugates-for-lch/) - Robert Arceci MD, PhD Johns Hopkins - Baltimore, Maryland USA Total Amount of Award: $60,000 (paid over two years) $45,000 of total award paid by the Histiocytosis Association of Canada Grant Awarded in: 2002-2004
- [LCH-III Clinical Trial](https://histio.j2test.com/grants/lch-iii-clinical-trial-2/) - Nicole Grois MD St. Anna Children’s Hospital - Vienna, Austria Total Amount of Award: $45,000 (paid over two years) Grant Awarded in: 2002-2004
- [Investigation of Molecular Mechanisms Underlying LCH: Characterization of a Disease Specific DNA Library](https://histio.j2test.com/grants/investigation-of-molecular-mechanisms-underlying-lch-characterization-of-a-disease-specific-dna-library/) - Tony Chu FRCP Hammersmith Hospital - London, United Kingdom Total Amount of Award: $30,000 Grant Awarded in: 2002-2004
- [Investigation Using DNS Microarrays of the Expression of Matrix Metalloproteinases in Normal and Langerhans Cells](https://histio.j2test.com/grants/investigation-using-dns-microarrays-of-the-expression-of-matrix-metalloproteinases-in-normal-and-langerhans-cells/) - Stephen Jolles PhD National Institute for Medical Research - London, United Kingdom Total Amount of Award: $30,000 Grant Awarded in: 2002-2004
- [Investigating Chemokine Receptor Usage as an Explanation for the Aberrant Behaviour of CD1a Cells in LCH](https://histio.j2test.com/grants/investigating-chemokine-receptor-usage-as-an-explanation-for-the-aberrant-behaviour-of-cd1a-cells-in-lch/) - Nicola Annels MD Leiden University Medical Center - Leiden, The Netherlands Total Amount of Award: $60,000 (paid over two years) Grant Awarded in: 2002-2004
- [FLT3 Ligand in LCH](https://histio.j2test.com/grants/flt3-ligand-in-lch/) - Anna Paluka MD, PhD Baylor Institute for Immunology Research - Dallas, Texas USA Total Amount of Award: $60,000 (paid over two years) Grant Awarded in: 2002-2004
- [Biologic Correlates of Response to Therapy in LCH](https://histio.j2test.com/grants/biologic-correlates-of-response-to-therapy-in-lch/) - Kenneth McClain MD, PhD Baylor College of Medicine - Houston, Texas USA Total Amount of Award: $30,000 Grant Awarded in: 2002-2004
- [Revised International Treatment Protocol for HLH-94 Clinical Trial](https://histio.j2test.com/grants/revised-international-treatment-protocol-for-hlh-94-clinical-trial/) - Jan-Inge Henter MD, PhD Astrid Lindgren Children's Hospital - Stockholm, Sweden Award Amount: $30,000 Grant Awarded in: 2001
- [Genetic and Functional Studies on the Pathogenesis of FHL](https://histio.j2test.com/grants/genetic-and-functional-studies-on-the-pathogenesis-of-fhl/) - Jan-Inge Henter MD, PhD (PI) and Bengt Fadeel MD Karolinska Hopital - Stockholm, Sweden Award Amount: $30,000 Grant Awarded in: 2001
- [Cytotoxic Cell Studies in Family Members of Patients with Hemophagocytic Lymphohistiocytosis (HLH) and Patients with Macrophage Activation Syndrome (MAS)](https://histio.j2test.com/grants/cytotoxic-cell-studies-in-family-members-of-patients-with-hemophagocytic-lymphohistiocytosis-hlh-and-patients-with-macrophage-activation-syndrome-mas/) - Alexandra Filipovich MD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Award Amount: $30,000 Grant Awarded in: 2001
- [Analysis of Gene Expression in HLH Patients Using DNA Microarrays](https://histio.j2test.com/grants/analysis-of-gene-expression-in-hlh-patients-using-dna-microarrays/) - Janos Sumegi MD University of Nebraska Medical Center - Omaha, Nebraska USA Award Amount: $30,000 Grant Awarded in: 2001
- [LCH-III Clinical Trial](https://histio.j2test.com/grants/lch-iii-clinical-trial/) - Nicole Grois MD St. Anna Children’s Hospital - Vienna, Austria Award Amount: $30,000 Grant Awarded in: 2001
- [Evaluation of Thalidomide for Treatment of Resistant Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/evaluation-of-thalidomide-for-treatment-of-resistant-langerhans-cell-histiocytosis/) - Kenneth McClain MD, PhD Texas Children’s Hospital - Houston, Texas USA Award Amount: $30,000 Grant Awarded in: 2001
- [Analysis of the Tumor Necrosis Factor Receptor Pathway in LCH](https://histio.j2test.com/grants/analysis-of-the-tumor-necrosis-factor-receptor-pathway-in-lch/) - Manfred B. Lutz PhD and Jens Oliver Funk MD University of Erlangen - Erlangen, Germany Award Amount: $30,000 Grant Awarded in: 2001
- [Epidemiology Study of LCH in Children in a Special Population Group](https://histio.j2test.com/grants/epidemiology-study-of-lch-in-children-in-a-special-population-group/) - Jonathan Ducore MD University of California, Davis Medical Center - Davis, California USA Award Amount: $5,500 Grant Awarded in: 2000
- [RNA Array Analysis for Normal Development of Dendritic Cells](https://histio.j2test.com/grants/rna-array-analysis-for-normal-development-of-dendritic-cells/) - Mikhail M. Dikov PhD Vanderbilt University - Nashville, Tennessee USA Award Amount: $30,000 Grant Awarded in: 2000
- [Novel Genes in Histiocytosis](https://histio.j2test.com/grants/novel-genes-in-histiocytosis/) - Jacques Banchereau PhD Baylor Institute for Immunology Research - Dallas, Texas USA Award Amount: $30,000 Grant Awarded in: 2000
- [CNS Clinical Trial](https://histio.j2test.com/grants/cns-clinical-trial/) - Helmut Gadner MD, FRCP and Nicole Grois MD St. Anna Children’s Hospital - Vienna, Austria Award Amount: $48,500 Grant Awarded in: 2000
- [Blood Dendritic Cells in Histiocytosis](https://histio.j2test.com/grants/blood-dendritic-cells-in-histiocytosis/) - A. Karolina Palucka MD, PhD Baylor Institute for Immunology Research - Dallas, Texas USA Award Amount: $30,000 Grant Awarded in: 2000
- [Analysis of T-cell Dysfunction in Childhood Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/analysis-of-t-cell-dysfunction-in-childhood-hemophagocytic-lymphohistiocytosis/) - Eiichi Ishii MD, PhD Hamanomachi Hospital - Fukuoka, Japan Award Amount: $29,100 Grant Awarded in: 2000
- [Targeted Imaging & Therapy with Humanized Anti-CD1a ScFv Antibody Conjugates for Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/targeted-imaging-therapy-with-humanized-anti-cd1a-scfv-antibody-conjugates-for-langerhans-cell-histiocytosis/) - Robert Arceci MD, PhD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Award Amount: $30,000 Grant Awarded in: 2000
- [Mouse Model of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/mouse-model-of-langerhans-cell-histiocytosis/) - Pieter Leenen PhD (PI); Karel Hahlen MD, PhD; R. Maarten Egeler MD, PhD Erasmus University - Rotterdam, The Netherlands Award Amount: $30,000 Grant Awarded in: 2000
- [LCH-II Clinical Trial](https://histio.j2test.com/grants/lch-ii-clinical-trial/) - Helmut Gadner MD, FRCP (PI) and Nicole Grois MD St. Anna Children’s Hospital - Vienna, Austria Award Amount: $25,000 Grant Awarded in: 2000
- [Assessment of Risk Factor for the Development of Diabetes & Other Central Nervous System Abnormalities in LCH](https://histio.j2test.com/grants/assessment-of-risk-factor-for-the-development-of-diabetes-other-central-nervous-system-abnormalities-in-lch/) - Nicole Grois MD St. Anna Children’s Hospital - Vienna, Austria Award Amount: $30,000 Grant Awarded in: 2000
- [Molecular Analysis of the Cells in Histiocytosis](https://histio.j2test.com/grants/molecular-analysis-of-the-cells-in-histiocytosis/) - Ralph Steinman MD and Svetlana Mojsov MD The Rockefeller University - New York, New York USA Award Amount: $30,000
- [Dynamics of Calcium Fluxes in Lymphocytes and Histiocytes Analyzed by Confocal Laser Scanning Microscopy](https://histio.j2test.com/grants/dynamics-of-calcium-fluxes-in-lymphocytes-and-histiocytes-analyzed-by-confocal-laser-scanning-microscopy/) - E. Marion Schneider PhD Universitatsklinik fur Anasthesiologie - Ulm, Germany Award Amount: $19,964
- [Study of Differentiation and Clonality of Langerhans Cell Precursors in Patients with LCH](https://histio.j2test.com/grants/study-of-differentiation-and-clonality-of-langerhans-cell-precursors-in-patients-with-lch/) - Nicole Brousse MD Hospital Necker Enfants Malades - Paris, France Award Amount: $20,000
- [Genetic Mapping in Familial Haemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/genetic-mapping-in-familial-haemophagocytic-lymphohistiocytosis/) - D. Mark Layton and Michel R.A. Lalloz PhD King’s College - London, United Kingdom Award Amount: $19,960
- [Design for a Mouse Model of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/design-for-a-mouse-model-of-langerhans-cell-histiocytosis/) - Kenneth McClain MD, PhD Texas Children’s Hospital - Houston, Texas USA Award Amount: $30,000
- [Association of HHV-8 with Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/association-of-hhv-8-with-langerhans-cell-histiocytosis/) - Frank Jenkins PhD University of Pittsburgh Cancer Institute - Pittsburgh, Pennsylvania USA Award Amount: $16,609
- [Development of a Single Chain Monoclonal Antibody to CD1a for Immunoimaging and Treatment of Patients with Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/development-of-a-single-chain-monoclonal-antibody-to-cd1a-for-immunoimaging-and-treatment-of-patients-with-langerhans-cell-histiocytosis/) - Tony Chu FRCP Royal Post Graduate Medical School - London, United Kingdom Award Amount: $22,755
- [Immune Function Studies in Family Members of Patients with Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/immune-function-studies-in-family-members-of-patients-with-hemophagocytic-lymphohistiocytosis/) - Alexandra Filipovich MD Cincinnati Children’s Hospital Medical Center - Cincinnati, Ohio USA Award Amount: $19,923
- [Polypeptide Receptors for Dendritic Cell Function and Recruitment](https://histio.j2test.com/grants/polypeptide-receptors-for-dendritic-cell-function-and-recruitment/) - Svetlana Mojsov PhD and Ralph M. Steinman MD The Rockefeller University - New York, New York USA Award Amount: $50,000
- [Defects of Apoptosis as a Cause of Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/defects-of-apoptosis-as-a-cause-of-hemophagocytic-lymphohistiocytosis/) - Keith Elkon MD Hospital for Special Surgery - New York, New York USA Award Amount: $49,464
- [Cell-Associated and Soluble Macrophage Mannose Receptor: A Potential New Marker for Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/cell-associated-and-soluble-macrophage-mannose-receptor-a-potential-new-marker-for-langerhans-cell-histiocytosis/) - Siamon Gordon PhD Sir Williams Dunn School of Pathology - Oxford, United Kingdom Award Amount: $50,000
- [Investigation of Possible Associations of Histocompatibility and/or Tumor Necrosis Factor Types with Susceptibility to LCH or Particular Clinical Manifestations of this Disease](https://histio.j2test.com/grants/investigation-of-possible-associations-of-histocompatibility-and-or-tumor-necrosis-factor-types-with-susceptibility-to-lch-or-particular-clinical-manifestations-of-this-disease/) - Marilyn Pollack PhD and Kenneth McClain MD, PhD Texas Children’s Hospital - Houston, Texas USA Award Amount: $20,000
- [Isolation, Identification, and Studies on the Biology of a Transmissible Agent Involved in the Causation of Langerhans Cell Histiocytosis: Implications for Future Treatment Strategies for Disseminated LCH](https://histio.j2test.com/grants/isolation-identification-and-studies-on-the-biology-of-a-transmissible-agent-involved-in-the-causation-of-langerhans-cell-histiocytosis-implications-for-future-treatment-strategies-for-disseminated/) - George Kannourakis PhD Royal Children’s Hospital - Victoria, Australia Award Amount: $72,000
- [The Role of Apoptosis (Programmed Cell Death) in the Pathogenesis of LCH](https://histio.j2test.com/grants/the-role-of-apoptosis-programmed-cell-death-in-the-pathogenesis-of-lch/) - Michael Weintraub MD Hadassah-Hebrew University Medical School - Jerusalem, Israel Award Amount: $20,000
- [Immune Dysregulation in Canine Langerhans Cell Histiocystosis; An Animal Model for the Human Disease](https://histio.j2test.com/grants/immune-dysregulation-in-canine-langerhans-cell-histiocystosis-an-animal-model-for-the-human-disease/) - Peter Moore PhD University of California, School of Veterinary Medicine - Davis, California USA Award Amount: $20,000
- [Generation of Immortalized Cell Lines of Langerhans Cell and Langerhans Cell Histiocytosis Cells](https://histio.j2test.com/grants/generation-of-immortalized-cell-lines-of-langerhans-cell-and-langerhans-cell-histiocytosis-cells/) - Tony Chu FRCP Royal Post Graduate Medical School - London, United Kingdom Award Amount: $25,000
- [Rosai-Dorfman Disease (RDD) Biology](https://histio.j2test.com/grants/rosai-dorfman-disease-rdd-biology/) - Marco Paulli, MD Institute of Surgical Pathology - Pavia, Italy Award Amount: $10,000
- [A Study of Clonality of LCH in Female Patients by Identification of the Inactive X Chromosomes in Single LCH Cells](https://histio.j2test.com/grants/a-study-of-clonality-of-lch-in-female-patients-by-identification-of-the-inactive-x-chromosomes-in-single-lch-cells/) - Jon Pritchard FRCP; Marilyn Monk, PhD; Marian Malone FRCP Hospital for Sick Children - London, United Kingdom Award Amount: $10,000
- [Clonality & Cytogenetic Abnormalities in Patients with Langerhans Cell Histiocytosis of Varying Clinical Severity](https://histio.j2test.com/grants/clonality-cytogenetic-abnormalities-in-patients-with-langerhans-cell-histiocytosis-of-varying-clinical-severity/) - Tony Chu FRCP Royal Post Graduate Medical School - London, United Kingdom Award Amount: $10,000
- [Langerhans Cell Histiocytosis I & II Studies - North American and European Regional Studies](https://histio.j2test.com/grants/langerhans-cell-histiocytosis-i-ii-studies-north-american-and-european-regional-studies/) - Stephan Ladisch, MD; H. Stacy Nicholson, MD; Helmut Gadner, MD, FRCP Children’s National Medical Center - Washington, District of Columbia USA Award Amount: $40,000
- [Chromosomal Localization of the Genetic Lesion in Familial Hemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/chromosomal-localization-of-the-genetic-lesion-in-familial-hemophagocytic-lymphohistiocytosis/) - Jan-Inge Henter, MD, PhD and Gosta Holmgren, MD, PhD Karolinska Hopital - Stockholm, Sweden Award Amount: $10,000
- [Molecular Basis of NK Cell Dysfunction in Familial Haemophagocytic Lymphohistiocytosis](https://histio.j2test.com/grants/molecular-basis-of-nk-cell-dysfunction-in-familial-haemophagocytic-lymphohistiocytosis/) - E. Marion Schneider, PhD University of Dusseldorf - Dusseldorf, Germany Award Amount: $9,065
- [HLH Clinical Trial/ NK Cell Activity](https://histio.j2test.com/grants/hlh-clinical-trial-nk-cell-activity/) - Jan-Inge Henter, MD, PhD Karolinska Hopital - Stockholm, Sweden Award Amount: $2,000
- [Defects of Apoptosis as a Cause of Hemophagocytic Lymphohistiocytosis Syndromes](https://histio.j2test.com/grants/defects-of-apoptosis-as-a-cause-of-hemophagocytic-lymphohistiocytosis-syndromes/) - Keith Elkon, MD The Hospital for Special Surgery - New York, New York USA Award Amount: $50,439
- [T-cell Receptor VB Analysis in Histiocytosis Syndromes: Role of Superantigens](https://histio.j2test.com/grants/t-cell-receptor-vb-analysis-in-histiocytosis-syndromes-role-of-superantigens/) - Murali Chintaqumpala, MD Texas Children’s Hospital - Houston, Texas USA Award Amount: $10,000
- [Histiocytosis and Familial Erythrophagocytic Lymphohistiocytosis (FEL) Research](https://histio.j2test.com/grants/histiocytosis-and-familial-erythrophagocytic-lymphohistiocytosis-fel-research/) - Diane Komp, MD and Joel Rappeport, MD Yale Medical School - New Haven, Connecticut USA Award Amount: $30,000
- [T-cell Receptor Vo & Vs Diversity in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/t-cell-receptor-vo-vs-diversity-in-langerhans-cell-histiocytosis/) - Jonna Hvas, PhD and George Kannourakis, PhD Royal Children’s Hospital - Victoria, Australia Award Amount: $10,000
- [Generation of Immortalized Cell Lines of Langerhans Cell and Langerhans Cell Histiocytosis Cells](https://histio.j2test.com/grants/generation-of-immortalized-cell-lines-of-langerhans-cell-and-langerhans-cell-histiocytosis-cells-2/) - Tony Chu FRCP Royal Post Graduate Medical School - London, United Kingdom Award Amount: $25,000 (paid over two years)
- [Characterization of T-cells and Langerhans Cells in LCH](https://histio.j2test.com/grants/characterization-of-t-cells-and-langerhans-cells-in-lch/) - Eric Classen, MD and Maarten Egeler, MD Sophia Children’s Hospital - Rotterdam, The Netherlands Award Amount: $10,000
- [Development of a Mouse Xenograft Model to Examine the Localization, Binding & Killing of CD1a Positive Cells by Monoclonal Antibodies & Single Chain Fvs](https://histio.j2test.com/grants/development-of-a-mouse-xenograft-model-to-examine-the-localization-binding-killing-of-cd1a-positive-cells-by-monoclonal-antibodies-single-chain-fvs/) - Samuel Murray Royal Post Graduate Medical School - London, United Kingdom Award Amount: $10,000
- [Juvenile Chronic Myelogeous Leukemia: Purification and Characterization of the Leukemic Stem Cells In Vitro & In Vivo](https://histio.j2test.com/grants/juvenile-chronic-myelogeous-leukemia-purification-and-characterization-of-the-leukemic-stem-cells-in-vitro-in-vivo/) - Melvin Freeman, MD Hospital for Sick Children - Toronto, Canada Award Amount: $9,700
- [Tumor Necrosis Factor-Alpha and Interferon-Gamma Gene Structure in Children with Histiocytosis](https://histio.j2test.com/grants/tumor-necrosis-factor-alpha-and-interferon-gamma-gene-structure-in-children-with-histiocytosis/) - Kenneth McClain, MD, PhD Baylor College of Medicine - Houston, Texas USA Award Amount: $10,000
- [Pediatric Immunodeficiency Fund](https://histio.j2test.com/grants/pediatric-immunodeficiency-fund/) - Alexandria Filipovich MD University Hospital and Clinic of Minnesota - Minneapolis, Minnesota USA Award Amount: $1,000
- [Phase II Trial of 2 Chlorodeoxyadewosine in the Management of the Histiocytic Syndromes](https://histio.j2test.com/grants/phase-ii-trial-of-2-chlorodeoxyadewosine-in-the-management-of-the-histiocytic-syndromes/) - Alan Saven, MD Green Cancer Center - La Jolla, California USA Award Amount: $10,000
- [Studies on Cytokines, Clonality & Apoptosis in HLH Cells](https://histio.j2test.com/grants/studies-on-cytokines-clonality-apoptosis-in-hlh-cells/) - Shinsaku Imashuku, MD Kyoto City Institute of Health & Environmental Science - Kyoto, Japan Award Amount: $10,000
- [Comparative Genomic Hybridization in Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/comparative-genomic-hybridization-in-langerhans-cell-histiocytosis/) - Mary Haag, PhD All Children’s Hospital - St. Petersburg, Florida USA Award Amount: $10,000
- [Role of GM-CSF in the Pathogeny of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/role-of-gm-csf-in-the-pathogeny-of-langerhans-cell-histiocytosis/) - Nicole Brousse, MD Hopital Necker Enfants Malades - Paris, France Award Amount: $10,000
- [Pathogenesis & Biological Behavior of Langerhans Cell Histiocytosis: The Role of Cytokines and Cytokine Receptors](https://histio.j2test.com/grants/pathogenesis-biological-behavior-of-langerhans-cell-histiocytosis-the-role-of-cytokines-and-cytokine-receptors/) - Wim Timens, MD, PhD Groningen University Hospital - Groningen, The Netherlands Award Amount: $5,500
- [Immune Dysregulation During the Response to Murine Malignant Histiocytosis](https://histio.j2test.com/grants/immune-dysregulation-during-the-response-to-murine-malignant-histiocytosis/) - Angela Panoskaltsis-Mortari, PhD University of Minnesota - Minneapolis, Minnesota USA Award Amount: $10,000
- [Bone Marrow Involvement in Patients with Multi-System Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/bone-marrow-involvement-in-patients-with-multi-system-langerhans-cell-histiocytosis/) - Michael Dworzak, MD and Nicole Grois, MD St. Anna Children’s Hospital - Vienna, Austria Award Amount: $10,000
- [Determination of Clonality in Langerhans Cell Histiocytosis (LCH)](https://histio.j2test.com/grants/determination-of-clonality-in-langerhans-cell-histiocytosis-lch/) - Cheryl Willman, MD University of New Mexico - Albuquerque, New Mexico USA Award Amount: $40,000
- [Molecular Analysis of LCH: Clonality, Genetics, and Drug Resistance](https://histio.j2test.com/grants/molecular-analysis-of-lch-clonality-genetics-and-drug-resistance/) - Cheryl Willman, MD University of New Mexico Cancer Center - Albuquerque, New Mexico USA Award Amount: $40,000
- [Identification of Specific T-cell Receptor: Rearrangements in LCH Lesions](https://histio.j2test.com/grants/identification-of-specific-t-cell-receptor-rearrangements-in-lch-lesions/) - Jack Gorski, PhD Blood Center of Southwest Wisconsin - Milwaukee, Wisconsin USA Award Amount: $20,000
- [Gangliosides and the Pathogenesis of FEL](https://histio.j2test.com/grants/gangliosides-and-the-pathogenesis-of-fel-2/) - Ruixiang Li, PhD and Stephan Ladisch, MD Children’s National Medical Center - Washington, District of Columbia USA Award Amount: $10,000
- [A Molecular Study of Histiocytic Disorders in Children: A Search for Bacteria or Viral Agents, Identification of a T-cell Clonal Response](https://histio.j2test.com/grants/a-molecular-study-of-histiocytic-disorders-in-children-a-search-for-bacteria-or-viral-agents-identification-of-a-t-cell-clonal-response/) - Clifford C Bailey FRCP; Ian J Lewis; Sally E Kinsey, MD; Caroline R Shiach, MD St. James Memorial Hospital - Leeds, United Kingdom Award Amount: $10,000
- [Molecular Studies on the Aetiology and Clonality of LCH](https://histio.j2test.com/grants/molecular-studies-on-the-aetiology-and-clonality-of-lch/) - George Kannourakis, MD, PhD Royal Children’s Hospital - Victoria, Australia Award Amount: $40,000
- [Characterization of the Presence and Activation of Growth Factors and Their Receptors in LCH Cells](https://histio.j2test.com/grants/characterization-of-the-presence-and-activation-of-growth-factors-and-their-receptors-in-lch-cells/) - Christian Nezelof, MD (PI) and Sylvette Barbey, PhD Hospital Saint-Louis - Paris, France Award Amount: $10,000
- [Cytokine Production in Langerhans Cell Histiocytoses](https://histio.j2test.com/grants/cytokine-production-in-langerhans-cell-histiocytoses/) - George Kannourakis, MD, PhD Royal Children’s Hospital - Victoria, Australia Award Amount: $10,000
- [A SCID Mouse Model of LCH](https://histio.j2test.com/grants/a-scid-mouse-model-of-lch/) - Kenneth McClain, MD, PhD Baylor College of Medicine - Houston, Texas USA Award Amount: $10,000
- [Characterization of Cytokine Production by LCH Cells](https://histio.j2test.com/grants/characterization-of-cytokine-production-by-lch-cells/) - Raymond Yu, MD Royal Post Graduate Medical School - London, United Kingdom Award Amount: $10,000
- [Pathogenesis & Biological Behavior of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/pathogenesis-biological-behavior-of-langerhans-cell-histiocytosis/) - Wim Timens MD, PhD and Willem A. Kemps MD, PhD Groningen University Hospital - Groningen, The Netherlands Award Amount: $7,500
- [Possible Viral Etiology of Langerhans Cell Histiocytosis](https://histio.j2test.com/grants/possible-viral-etiology-of-langerhans-cell-histiocytosis/) - Kenneth McClain MD, PhD Texas Children’s Hospital - Houston, Texas USA Award Amount: $10,000
- [Investigations of Immunotherapy of LCH Using Monoclonal Antibodies to CD1a](https://histio.j2test.com/grants/investigations-of-immunotherapy-of-lch-using-monoclonal-antibodies-to-cd1a/) - Tony Chu FRCP Royal Post Graduate Medical School - London, United Kingdom Award Amount: $10,000
- [Cytokines in Langerhans Cell Histiocytosis: A Molecular Biology Study](https://histio.j2test.com/grants/cytokines-in-langerhans-cell-histiocytosis-a-molecular-biology-study/) - Pauline Chou, MD Children’s Memorial Hospital - Chicago, Illinois USA Award Amount: $10,000
- [Gangliosides and the Pathogenesis of FEL](https://histio.j2test.com/grants/gangliosides-and-the-pathogenesis-of-fel/) - Stephan Ladisch, MD Children’s National Medical Center - Washington, District of Columbia USA Award Amount: $10,000
- [Ultrastructural Studies in Langerhans Cell Histiocytosis: Evidence of Cytological Changes Reflecting Effects of Virus](https://histio.j2test.com/grants/ultrastructural-studies-in-langerhans-cell-histiocytosis-evidence-of-cytological-changes-reflecting-effects-of-virus/) - Gary Mierau, PhD Children’s Hospital of Denver - Denver, Colorado USA Award Amount: $9,650
- [Isolation and Culture of Human Fetal Dendritic/Langerhans Cells](https://histio.j2test.com/grants/isolation-and-culture-of-human-fetal-dendritic-langerhans-cells/) - Ronald Jaffe, MD Children’s Hospital of Pittsburgh - Pittsburgh, Pennsylvania USA Award Amount: $10,000
- [A Genetic Marker for FHL](https://histio.j2test.com/grants/a-genetic-marker-for-fhl/) - Jan-Inge Henter MD, PhD Karolinska Hospital - Stockholm, Sweden Award Amount: $10,000
- [Transient & Stable Expression of the CD1a Molecule in Human Cell Lines](https://histio.j2test.com/grants/transient-stable-expression-of-the-cd1a-molecule-in-human-cell-lines/) - Raymond Yu, MD Royal Post Graduate Medical School - London, United Kingdom Award Amount: $10,000

## Physicians

- [Sample Physician 2](https://histio.j2test.com/physicians/sample-physician-2/) - institution contact info etc.
- [Sample Physician](https://histio.j2test.com/physicians/sample-physician/) - You can add a bio of the physician here.

## Resources

- [Caregiving for Children and Adolescents Workbooks](https://histio.j2test.com/resources/caregiving-for-children-and-adolescents-workbooks/) - For caregivers of children and adolescents, Blood Cancer United has these free workbooks to help guide you through the process. Publications (Booklets) | Blood Cancer United
- [Caregiving for Adults Workbooks](https://histio.j2test.com/resources/caregiving-for-adults-workbooks/) - For caregivers of adults, Blood Cancer United has these free workbooks to help guide you through the process. Publications (Booklets) | Blood Cancer United
- [National Comprehensive Cancer Network Patient Resources](https://histio.j2test.com/resources/national-comprehensive-cancer-network-patient-resources/) - The National Comprehensive Cancer Network (NCCN) has published clinical guidelines for histiocytic neoplasms. While histiocytosis does not currently have patient guidelines, there are many great resources the NCCN provides. NCCN Guidelines for Patients, NCCN Patient Resource Card, and Questions to Ask About Cancer Care.
- [Emotional Response to Grief PDF](https://histio.j2test.com/resources/emotional-response-to-grief-pdf/) - SARAH-Emotional-response-to-grief.pdf (cameliamihai.ch)
- [Supporting Someone Who is Grieving - Harvard Health](https://histio.j2test.com/resources/supporting-someone-who-is-grieving/) - Ways to support someone who is grieving - Harvard Health
- [Art Therapy For Trauma](https://histio.j2test.com/resources/art-therapy-for-trauma/) - When Life Makes No Sense, Making Art Can Help Heal Your Heart - AWBW
- [A Healthy Grief Mindset](https://histio.j2test.com/resources/a-healthy-grief-mindset/) - A Healthy Grief Mindset (coachingatendoflife.com)
- [Coaching at End of Life - Grief Coaching](https://histio.j2test.com/resources/coaching-at-end-of-life-grief-coaching/) - Coaching at End of Life – Learn A Coach Approach to Being With the Dying and the Grieving
- [NORD Rare Caregiver Respite Program](https://histio.j2test.com/resources/nord-rare-caregiver-respite-program/) - The National Organization for Rare Disorders (NORD) Rare Caregiver Respite Program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder. The program provides financial assistance to enable the caregiver a break from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout
- [California Caregiver Resource Center](https://histio.j2test.com/resources/california-caregiver-resource-center/) - Founded in 1984, the California Caregiver Resource Centers are a network of 11 centers throughout California which serve family caregivers who are providing support for someone affected by chronic and debilitating health conditions https://www.caregivercalifornia.org/
- [Little Zebra Fund](https://histio.j2test.com/resources/little-zebra-fund/) - Little Zebra Fund aims to provide universal access to genetic diagnoses by eliminating the financial burden of testing for families. Location Restriction Little Zebra funds are currently only available to qualified providers in the SF Bay Area. We plan to expand our services as our non-profit grows. The Little Zebra Fund
- [Credit Counseling of Arkansas (CCOA), Inc.](https://histio.j2test.com/resources/credit-counseling-of-arkansas-ccoa-inc/) - Since 1995, non-profit Credit Counseling of Arkansas (CCOA), Inc. has helped thousands of families with personal finances issues by making a positive difference through helping people master their personal finances through free budget, credit & housing counseling, free seminars, credit report reviews and a Debt Management Program that can reduce interest rates, stop late fees,
- [Medication Assistance Tool](https://histio.j2test.com/resources/medication-assistance-tool/) - MAT is a search engine created by Pharmaceutical Research and Manufacturers of America (PhRMA) that allows patients and their loved ones to search for financial assistance resources available through biopharmaceutical industry programs for those who lack insurance or adequate prescription medicine coverage. https://medicineassistancetool.org/
- [Spanish-Language Brochures](https://histio.j2test.com/resources/spanish-language-brochures/) - histio.local/Spanish-Language-Brochures
- [AVP Deficiency Card (Wallet or Purse Sized)](https://histio.j2test.com/resources/avp-deficiency-card-wallet-or-purse-sized/) - The Pituitary Foundation AVP Deficiency Card 2023 This is a card created by the Pituitary Foundation for AVP Deficiency to help people inform their doctors of their condition. Especially useful if they ever need to go to the ER or change doctors. The QR code on the card takes the EMT or physicians to a
- [Managing Stress: How stress affects you and ways to cope](https://histio.j2test.com/resources/managing-stress-how-stress-affects-you-and-ways-to-cope/) - LLS Managing Stress 2023 - PDF Download
- [Guidebook Supporting Diverse Caregivers](https://histio.j2test.com/resources/guidebook-supporting-diverse-caregivers/) - https://www.caregiving.org/guidebook-supporting-diverse-caregivers/ The National Alliance for Caregiving conducted structured interviews with professionals from patient advocacy groups and diverse family caregivers caring for someone who had been diagnosed with heart disease, blood cancer, lung cancer or lupus, conditions that are known to disproportionately affect diverse communities. With the guidance of a panel of disease representative patient advocacy
- [Yellow Door Foundation](https://histio.j2test.com/resources/yellow-door/) - https://yellowdoorfoundation.org/ Since February 2018, Yellow Door has provided free, long-term lodging for families of the most medically complex pediatric patients being treated at UVA Children’s hospital. Each family brings a unique story with them when they walk through our doors. Over 90% of our children are undergoing cancer treatment or transplant surgery. These life-saving treatments leave
- [How to take Desmopressin safely and the importance of BREAKTHROUGH.](https://histio.j2test.com/resources/how-to-take-desmopressin-safely-and-the-importance-of-breakthrough/) - Guidance for management of Desmopressin and the importance of BREAKTHROUGH. Developed by: Dr. Cihan Atila, MD, PhD at University Hospital Basel, Department of Endocrinology, Diabetes & Metabolism and Pat Gildroy, Moderator of the "Got DI?" Facebook Group Click this chart for a visual representation. See below for a written explanation. BREAKTHROUGH AND HOW TO TAKE
- [Management of AVP-D Patient Card](https://histio.j2test.com/resources/management-of-avp-d-patient-card/) - Right Click--> Save as or Print to print out and keep in your wallet or purse in case of emergency as a resource to share with your doctor. Disclaimer: The points listed on this card are all possible points of care, which your doctor may need to adjust as necessary and not a concrete standard
- [Pediatric Resource Guide](https://histio.j2test.com/resources/pediatric-resource-guide/)
- [Supporting Diverse Family Caregivers: A Guide For Patient Advocacy Groups](https://histio.j2test.com/resources/supporting-diverse-family-caregivers-a-guide-for-patient-advocacy-groups/) - NAC DiverseCaregiversGuidebook
- [Post-Traumatic Stress Disorder in Rare Caregivers](https://histio.j2test.com/resources/post-traumatic-stress-disorder-in-rare-caregivers/) - POST TRAUMATIC STRESS DISORDER FLYER RARE CAREGIVER -PDF Download
- [WEP Clinical](https://histio.j2test.com/resources/wep-clinical/) - WEP Clinical is a clinical services company that sets up and manages Early Drug Access Programs to distribute potentially life-saving treatments to where there is an unmet medical need. Patients who have no viable treatment options available to them, who cannot receive an investigational drug through a clinical trial, or who live in a country
- [Center for Medicare and Medicaid Services](https://histio.j2test.com/resources/center-for-medicare-and-medicaid-services/) - The Center for Medicare and Medicaid Services is a .gov website with resources for those looking to begin or manage Medicare or Medicaid plans. Linked here is a great summary of PDFs, videos and separate webpages they offer, in many different languages.
- [Medicare.gov](https://histio.j2test.com/resources/medicaredotgov/) - Medicare.gov lists a wide swath of resources for populations based on age, disability and immigrant status in over 2 dozen languages.
- [Children and Young People with Cancer: A Parent's Guide](https://histio.j2test.com/resources/children-and-young-people-with-cancer-a-parents-guide/) - This booklet, developed by Children's Cancer & Leukemia Group, is for parents and carers of a child who has been diagnosed with cancer. We hope it answers your questions and helps you deal with some of the feelings you may have. This booklet gives information about children's cancers, the treatments that can be used and
- [Helping Parents Heal](https://histio.j2test.com/resources/helping-parents-heal/) - Helping Parents Heal (HPH) is a non-profit organization dedicated to assisting bereaved parents. Through support and resources offered, we aspire to help individuals become “Shining Light Parents”—meaning a shift from a state of emotional heaviness to one of hopefulness and greater peace of mind. HPH goes a step beyond other groups by allowing the open
- [Stress Relief Products for Caregivers from MyCaringPlan](https://histio.j2test.com/resources/stress-relief-products-for-caregivers-from-mycaringplan/) - My Caring Plan is a website focused on caregiving that has been featured on PBS. It takes a very special person to dedicate themselves to the care of another. And yet, caregiving is often one of the most stressful jobs, in large part due to the vital importance of the task. Selfless caregivers may feel
- [Caregiver Resources from MyCaringPlan](https://histio.j2test.com/resources/caregiver-resources-from-mycaringplan/) - My Caring Plan is a website focused on caregiving that has been featured on PBS. As a family caregiver, you may feel it is nearly impossible to take a break. This role often involves an around-the-clock commitment to your loved one, so you may feel you need to be available at all times. However, as
- [Caregiver Burnout Resources from MyCaringPlan](https://histio.j2test.com/resources/caregiver-burnout-resources-from-mycaringplan/) - My Caring Plan is a website focused on caregiving that has been featured on PBS. What to do when compassion becomes too heavy? Caregiver burnout is one of the first things to look out for. Some would say that a loved one’s illness is harder on the family members than on the person who is
- [Health Canada's Clinical Trials Database](https://histio.j2test.com/resources/health-canadas-clinical-trials-database/) - Health Canada, through its Clinical Trials Database, is providing to the public a listing of specific information relating to phase I, II and III clinical trials in patients. The database is managed by Health Canada and provides a source of information about Canadian clinical trials involving human pharmaceutical and biological drugs.
- [NiceRx](https://histio.j2test.com/resources/nicerx/) - NiceRx is a patient advocacy service that helps individuals access medications through Patient Assistance Programs for a set price of $49/month per medication. They work with over 200 U.S. based pharmaceutical manufacturers to offer over 1,500 FDA approved name medications. There is no limit to the number of medications you can request; if the medication
- [Cancer and Careers](https://histio.j2test.com/resources/cancer-and-careers/) - As the number of cancer survivors in the U.S. continues to grow, there is an increasing need for resources and support to help them get back to everyday life and work after diagnosis and treatment. Cancer and Careers helps more than 500,000 people each year — online, in print and in person — by providing
- [A Kid Again](https://histio.j2test.com/resources/a-kid-again/) - For over 27 years, A Kid Again has brought Hope, Happiness and Healing to families that have a child with a life threatening conditions. They provide cost free, year round, fun filled events we call adventures for the entire immediate family to participate in. A Kid Again serves kids from birth to age 20 so offers
- [Prescription Hope](https://histio.j2test.com/resources/prescription-hope/) - Prescription Hope works with thousands of Americans every month, obtaining prescription medications on their behalf for the set price of $50.00 per month per medication. They have a program for Rituxan (rituximab), Zelboraf (vemurafenib), and others. The income guidelines to qualify for Prescription Hope are as follows; An individual earning up to or around $30,000
- [Genentech Oncology Co-pay Assistance Program](https://histio.j2test.com/resources/genentech-oncology-co-pay-assistance-program/) - Oncology Co-pay Assistance Program to help eligible patients pay for prescription medication costs. Primarily for US patients, however there are eligibility options for international patients as well. Includes Cotellic (cobimetinib), Rituxan (rituximab), Zelboraf (vemurafenib), and others.
- [Rare Disease Resource Guide For Caregivers](https://histio.j2test.com/resources/rare-disease-resource-guide-for-caregivers/) - 2021 rare disease resource guide for caregivers published by Global Genes. It's brimming with advice and resources for caregivers of patients with rare diseases.
- [US Veteran Affairs](https://histio.j2test.com/resources/us-veteran-affairs/) - The following has been compiled by the experience of long-time Histio Community advocates to help you navigate the care you may need and resources you may be eligible to receive. "Disability Compensation is a tax-free monetary benefit paid to Veterans with disabilities that are the result of a disease or injury incurred or aggravated during
- [USA Employee Retirement Income Security Act (ERISA)](https://histio.j2test.com/resources/usa-employee-retirement-income-security-act-erisa/) - The Employee Retirement Income Security Act of 1974 (ERISA) is a federal law that sets minimum standards for most voluntarily established retirement and health plans in private industry to provide protection for individuals in these plans. ERISA also applies to private long-term and short-term disability insurance coverage provided by the employer. ERISA regulates employer disability
- [Machaon Diagnostics HLH Testing](https://histio.j2test.com/resources/machaon-diagnostics-hlh-testing/) - The HLH genetic panel from Machaon Diagnostics is the most comprehensive and fastest, with a STAT turnaround time of two business days. Clinical consultation is available after testing, informed by years of experience with HLH. They can also streamline the determination of trial eligibility. Founded in 2003, Machaon Diagnostics, Inc. is a CAP and CLIA-accredited
- [Make-an-IMPACT](https://histio.j2test.com/resources/make-an-impact/) - The Memorial Sloan Kettering Make-an-IMPACT Initiative is a rare-cancer global outreach initiative that provides free genomic profiling for patients with Langerhans Cell Histiocytosis (LCH), Erdheim-Chester Disease (ECD), Rosai-Dorfman Disease (RDD), Juvenile Xanthogranuloma (JXG), and Histiocytic Sarcoma (HS). Genomic profiling with world class, next-generation sequencing technology developed at Memorial Sloan Kettering Cancer Center aims to identify
- [Liam's Lighthouse](https://histio.j2test.com/resources/liams-lighthouse/) - Liam's Lighthouse Foundation (LLF) provides educational material and awareness about Hemophagocytic lymphohistiocytosis (HLH) including Histiocytic Disorders.
- [Eric's Journey Foundation](https://histio.j2test.com/resources/erics-journey-foundation/) - Eric's Journey Foundation provides support and awareness for HLH and Stills Disease. Their focus is providing education and support for newly diagnosed adults.
- [CHANCE Association (Children Against Cancer)](https://histio.j2test.com/resources/chance-association-children-against-cancer/) - CHANCE Association mission is to help Lebanese children with cancer, histiocytic and blood disorders to receive the necessary treatment and help cover expenses related to their treatment when families don't have the financial means to do so.
- [Divina Foundation](https://histio.j2test.com/resources/divina-foundation/) - The Divina Foundation was established in remembrance of Divine Angel Divina Joshi. Divina Foundation conducts various awareness programs in hospitals and provides support to families experiencing child loss.
- [OR Association](https://histio.j2test.com/resources/or-asociacion/) - OR Association fights to improve the quality of life of children and adolescents diagnosed with Langerhans cell histiocytosis (LCH). They provide emotional support for the whole family through workshops, raise awareness, host congresses for physicians and researchers and fund scientific research.
- [Família Histiocitose](https://histio.j2test.com/resources/familia-histiocitose/) - Família Histiocitose mission is to bring information and knowledge to the entire population and health sectors about histiocytosis, bringing family members, patients and doctors together in a large support community.
- [LHF Espoir](https://histio.j2test.com/resources/lhf-espoir/) - LHF Espoir mission is to raise awareness of familial hemophagocytic lymphohistiocytosis, advance research and improve care practices and support patients and families affected by familial HLH.
- [Associazione Italiana Linfoistiocitosi Emofagocitica (A.I.L.E.)](https://histio.j2test.com/resources/aile/) - AILE supports families of children and adults diagnosed with Hemophagocytic lymphohistiocytosis (HLH) and promotes and funds scientific research in Italy.
- [Virginia Garcia Memorial Fund](https://histio.j2test.com/resources/virginia-garcia-memorial-fund/) - Focuses on the needs of migrant farmworkers, both through the health center and outreach programs into the migrant camps.
- [Viacord - Sibling Cord Blood Transplant Program](https://histio.j2test.com/resources/viacord-sibling-cord-blood-transplant-program/) - This program provides ViaCord's comprehensive cord blood collection, processing and five years of storage at no cost to expecting parents who have a child in need of a transplant and meet the other enrollment requirements of the program. https://www.viacord.com/shop/newborns/sibling-connection
- [US Pain Foundation](https://histio.j2test.com/resources/us-pain-foundation/) - The US Pain Foundation is an organization serving people with pain through information, advocacy, and support.
- [United Way 2-1-1](https://histio.j2test.com/resources/united-way-2-1-1/) - 2-1-1’s Health Care Resource Guide is intended to provide information on state, federal and privately purchased health insurance programs for Connecticut residents.
- [United Healthcare Children's Foundation](https://histio.j2test.com/resources/united-healthcare-childrens-foundation/) - The Children's Foundation provides financial assistance toward the family's share of the cost of medical services.
- [Kelly Anne Dolan Memorial Fund](https://histio.j2test.com/resources/kelly-anne-dolan-memorial-fund/) - The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.
- [Be The Match Jason Carter Clinical Trials Search and Support](https://histio.j2test.com/resources/jason-carter-clinical-trials-search-and-support/) - Be The Match Jason Carter Clinical Trials Search and Support helps people with blood cancers and blood disorders, including HLH, LCH and malignant histiocytosis, find and join clinical trials. They offer free one-on-one support with a clinical trial navigator, an online clinical trial search tool, educational resources, and a grant to help pay costs associated.
- [Insure Kids Now](https://histio.j2test.com/resources/insure-kids-now/) - Your state, and every state in the nation, has a health insurance program for infants, children, and teens. The insurance is available to children in working families, including families that include individuals with a variety of immigration status.
- [Indiana Children's Special Health Care Services (CSHCS)](https://histio.j2test.com/resources/indiana-childrens-special-health-care-services-cshcs/) - Provides supplemental medical coverage to help families of children who have serious, chronic medical conditions.
- [Immunization Action Coalition](https://histio.j2test.com/resources/immunization-action-coalition/) - Presents straightforward information about vaccine-preventable diseases and their vaccines. This site also has links to VISs, immunization and disease statistics, state immunization laws, state health department websites, and other topics.
- [Hope Lodge - American Cancer Society](https://histio.j2test.com/resources/hope-lodge-american-cancer-society/) - Having to travel out of town for treatment is hard. Yet the American Cancer Society has a place where patients and their caregivers can find help and hope when home is far away - Hope Lodge.
- [Hoosier Healthwise](https://histio.j2test.com/resources/hoosier-healthwise/) - Hoosier Healthwise is a health insurance program for Indiana children, pregnant women, and low-income families. Health care is provided at little or no cost to Indiana families enrolled in the program.
- [Histiozytose Hilfe e.V.](https://histio.j2test.com/resources/histiozytose-hilfe-e-v/) - Histiozytose Hilfe e.V. offers support to patients and their families suffering from histiocytosis in Germany.
- [Histiocytosis Association of Canada](https://histio.j2test.com/resources/histiocytosis-association-of-canada/) - International Histio Organization
- [Histiocytosis and Social Security Disability](https://histio.j2test.com/resources/histiocytosis-and-social-security-disability/) - Information on Social Security Disability for Histiocytosis patients.
- [Histio UK](https://histio.j2test.com/resources/histio-uk/) - Dedicated to promoting scientific research to uncover the causes of histiocytic diseases and ensure early diagnosis, effective treatment and a cure.
- [Hemophagocytic Lymphohistiocytosis (HLH) - Info from CHOP](https://histio.j2test.com/resources/hemophagocytic-lymphohistiocytosis-hlh-info-from-chop/) - Information on HLH from the Children's Hospital of Philadelphia, including disease information and patient and family resources.
- [Heating Assistance Program (HAP) - Alaska](https://histio.j2test.com/resources/heating-assistance-program-hap-alaska/) - Apply for financial assistance for heating and utilities.
- [Healthy Indiana Plan](https://histio.j2test.com/resources/healthy-indiana-plan/) - The HIP plan covers individuals who do not live with a dependent child, and parents who earn up to approximately $44,000 annually for a family of four, have been uninsured for six months and do not have access to insurance through their employer.
- [Health Care Services Alaska - Denali KidCare](https://histio.j2test.com/resources/health-care-services-alaska-denali-kidcare/) - Denali KidCare is a State of Alaska program designed to ensure that children and teens of both working and non-working families can have the health insurance they need.
- [Health Care Services - Case Management Services AK](https://histio.j2test.com/resources/health-care-services-case-management-services-ak/) - Alaska Medicaid, through their contractor Qualis Health, provides case management services designed for patients with serious illnesses, injuries, and some chronic conditions.
- [Global Genes](https://histio.j2test.com/resources/global-genes/) - Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®.
- [Give Kids the World](https://histio.j2test.com/resources/give-kids-the-world/) - Nonprofit organization that provides cost-free visits to Central Florida attractions and Give Kids the World Village.
- [Florida KidCare](https://histio.j2test.com/resources/florida-kidcare/) - KidCare is Florida’s children’s health insurance program for uninsured children under age 19. It is made up of four parts: MediKids, Healthy Kids, and Children’s Medical Services Network for children with special health care needs, and Medicaid for kids.
- [First Steps](https://histio.j2test.com/resources/first-steps/) - First Steps' goal is to assure that all Indiana families with infants and toddlers experiencing developmental delays or disabilities have access to early intervention services close to home when they need them.
- [Family Support Program of North Carolina](https://histio.j2test.com/resources/family-support-program-of-north-carolina/) - Family Support Network of North Carolina promotes and provides support for families with children who have special needs.
- [Family Health Plus - New York Dept. of Health](https://histio.j2test.com/resources/family-health-plus-new-york-dept-of-health/) - Family Health Plus provides comprehensive coverage, including prevention, primary care, hospitalization, prescriptions and other services.
- [ECD Global Alliance](https://histio.j2test.com/resources/ecd-global-alliance/) - The ECD Global Alliance (ECDGA) is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. The organization represents patients, caregivers and medical professionals from around the world.
- [Disability.gov](https://histio.j2test.com/resources/disability-gov/) - Disability.gov is an award-winning federal Web site that contains disability-related resources on programs, services, laws and regulations to help people with disabilities lead full, independent lives.
- [Corporate Angel Network](https://histio.j2test.com/resources/corporate-angel-network/) - Corporate Angel Network is a charitable organization whose sole mission is to fly cancer patients (both children and adults) to treatment at no cost to them on empty seats - on both private and corporate planes. It is open to all cancer patients, bone marrow donors and recipients, and stem cell donors and recipients who
- [Cord Blood Registry](https://histio.j2test.com/resources/cord-blood-registry/) - As the largest, most experienced family cord blood bank, CBR has helped many families use their stem cells for lifesaving transplants and in research for other therapies.
- [Contact a Family](https://histio.j2test.com/resources/contact-a-family/) - This is a national registered charity in the U.K. that provides support and information to families of disabled children, as well as children with rare diseases.
- [Connecticut State Office of Rural Health](https://histio.j2test.com/resources/connecticut-state-office-of-rural-health/) - Working together to promote the health of persons living in rural Connecticut through education, communication and partnerships.
- [Compassionate Friends](https://histio.j2test.com/resources/compassionate-friends/) - A national nonprofit, self-help support organization that assists families toward the positive resolution of grief following the death of a child of any age.
- [Clinical Trials](https://histio.j2test.com/resources/clinical-trials/) - Search all ongoing clinical trials from the NIH related to histiocytosis.
- [Chronic and Acute Medical Assistance (CAMA)](https://histio.j2test.com/resources/chronic-and-acute-medical-assistance-cama/) - CAMA is a state funded program designed to help needy Alaskans who have specific illnesses get the medical care they need to manage those illnesses.
- [Children's Oncology Camping Association International](https://histio.j2test.com/resources/childrens-oncology-camping-association-international/) - Children's Oncology Camping Association International, C.O.C.A., is an international assembly of people providing camping programs for children with cancer.
- [Children's National Health System](https://histio.j2test.com/resources/childrens-national-health-system/) - Children’s National Health System, located in Washington, DC, is a leader in the development of innovative new treatments for childhood illness and injury. Serving the nation’s children for more than 140 years.
- [Children's Medical Services](https://histio.j2test.com/resources/childrens-medical-services/) - The Children's Medical Services (CMS) program provides children with special health care needs with a family centered, managed system of care.
- [Children's Health Insurance Program (CHIP)](https://histio.j2test.com/resources/childrens-health-insurance-program-chip/) - The Children's Health Insurance Program (CHIP) is a state and federal partnership that provides low-cost health insurance coverage for children in families who earn too much income to qualify for Medicaid but cannot afford to purchase private health ins.
- [Child Life, Education and Creative Arts Therapy - CHOP](https://histio.j2test.com/resources/child-life-education-and-creative-arts-therapy-chop/) - The goal of the Oncology Child Life, Education and Creative Arts Therapy program is to help children and families cope with the emotional stress and anxiety associated with cancer therapy and treatment.
- [Chai Lifeline](https://histio.j2test.com/resources/chai-lifeline/) - When serious illness strikes a child, the entire family is affected. Chai Lifeline's extensive network of free programs and services is designed to help every member of the family cope during this time of crisis.
- [United for the Fight Against Histiocytosis](https://histio.j2test.com/resources/united-for-the-fight-against-histiocytosis/) - Facebook Group.
- [The Oley Foundation](https://histio.j2test.com/resources/the-oley-foundation/) - Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.
- [Bone Marrow & Cancer Foundation](https://histio.j2test.com/resources/bone-marrow-and-cancer-foundation/) - The Bone Marrow & Cancer Foundation will provide you with financial assistance resources, information, programs and services about bone marrow/stem cell transplantation you need whether you are a patient, family member, friend, bone marrow donor or doctor. Some of their free services include financial assistance programs, therapy appointments, support groups, and patient navigation. Patient coordinators
- [Temporary Assistance for Needy Families (TANF)](https://histio.j2test.com/resources/temporary-assistance-for-needy-families-tanf/) - TANF is a program that provides cash assistance and supportive services to assist the family, helping them achieve economic self-sufficiency.
- [Super Sibs](https://histio.j2test.com/resources/super-sibs/) - Super Sibs mission is to honor, support and recognize brothers and sisters of children with cancer and their goal is to reach out to the brothers and sisters of over 12,600 children in the U.S. and Canada who are diagnosed with cancer each year.
- [Stichting Langerhans Cel Histiocytose](https://histio.j2test.com/resources/stichting-langerhans-cel-histiocytose/) - Histiocytosis Nederland is the patient organization for histiocytic diseases such as LCH, HLH and FHL.
- [State of Alaska Health and Social Services](https://histio.j2test.com/resources/state-of-alaska-health-and-social-services/) - To promote and protect the health and well being of Alaskians.
- [StarShine Hospice - Cincinnati Children's](https://histio.j2test.com/resources/starshine-hospice-cincinnati-childrens/) - The StarShine Hospice staff at Cincinnati Children's Hospital Medical Center provide various services to patients and families in cooperation with your child's family and under the direction of your child's physician.
- [Starlight Children's Foundation](https://histio.j2test.com/resources/starlight-childrens-foundation/) - Starlight Children’s Foundation is dedicated to improving the quality of life for children with chronic and life-threatening illnesses and life-altering injuries by providing entertainment, education and family activities that help them cope.
- [Stanley & Daphne Nkosi Foundation](https://histio.j2test.com/resources/stanley-daphne-nkosi-foundation/) - Zakithi Nkosi Clinical Haematology Center of Excellence.
- [SS/Disability Information from the Nat'l. MS Society](https://histio.j2test.com/resources/ss-disability-information-from-the-natl-ms-society/) - Although this is from the Nat'l. MS Society, their website has useful information regarding the Social Security Disability process. They also provide a helpful guidebook and sample letters from physicians to assist you in the application process.
- [Social Security Disability Facts](https://histio.j2test.com/resources/social-security-disability-facts/) - A government website explaining the faces and facts of disability.
- [Social Security Disability Benefits](https://histio.j2test.com/resources/social-security-disability-benefits/) - A government website summarizing federal programs that provide assistance to people with disabilities.
- [Social Security and Disability Resource Center](https://histio.j2test.com/resources/social-security-and-disability-resource-center/) - The Social Security and Disability Resource Center website provides information on the federal government's two disability benefit programs, title II social security disability benefits and title 16 SSI disability benefits.
- [Shadow Buddies](https://histio.j2test.com/resources/shadow-buddies/) - Shadow Buddies are condition-specific dolls designed to be a friend "just like me" for seriously ill or medically challenged children. Provide comfort to children, as well as effective method for educating newly-diagnosed children.
- [Ronald McDonald House Charities](https://histio.j2test.com/resources/ronald-mcdonald-house-charities/) - Provides low-cost, temporary housing for children and their families while undergoing treatment. Website includes listing of international locations.
- [Rare Lung Disease Consortium](https://histio.j2test.com/resources/rare-lung-disease-consortium/) - The Rare Lung Diseases Consortium (RLDC) is a network of physicians and patients working to accelerate clinical research and improve medical care for individuals with Rare Lung Diseases.
- [Rainbows](https://histio.j2test.com/resources/rainbows/) - Rainbows, the world's largest grief support organization, is an international non-profit organization that fosters emotional healing among children grieving a loss from a life-altering crisis.
- [Project Sunshine](https://histio.j2test.com/resources/project-sunshine/) - Project Sunshine is a nonprofit organization that provides free social, educational and recreational programs to children and families affected by medical challenges.
- [Patient Advocate Foundation](https://histio.j2test.com/resources/patient-advocate-foundation/) - National non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis.
- [Partnership for Prescription Assistance](https://histio.j2test.com/resources/partnership-for-prescription-assistance/) - Organization that helps uninsured or low-income patients obtain low-cost or free brand-name medications.
- [Office of Rare Diseases Research (ORDR)](https://histio.j2test.com/resources/office-of-rare-diseases-research-ordr/) - The Office of Rare Diseases Research (ORDR) at the National Institute of Health (NIH) coordinates research and information on rare diseases at the NIH and for the rare diseases community.
- [Office for Children with Special Health Care Needs - Arizona](https://histio.j2test.com/resources/office-for-children-with-special-health-care-needs-arizona/) - To continuously improve comprehensive systems of care that enhances the health, future and quality of life for children and youth with special health care needs and their families.
- [Northwest Regional Spinal Cord Injury System - SSDI/SSI Info](https://histio.j2test.com/resources/northwest-regional-spinal-cord-injury-system-ssdi-ssi-info/) - Navigating the System: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Information from the NW Regional Spinal Cord Injury System
- [NJ Family Care](https://histio.j2test.com/resources/nj-family-care/) - NJ FamilyCare is not a welfare program, but rather the State of New Jersey's way of providing affordable health coverage for kids and certain low-income parents.
- [NJ Dept. of Human Services - State Subsidies for Childcare](https://histio.j2test.com/resources/nj-dept-of-human-services-state-subsidies-for-childcare/) - Low- and moderate-income working parents can receive state subsidies for child care, including preschool instruction, after-school programs for children up to age 13, and care for children and teens with special needs.
- [NIH Genetic and Rare Diseases Info](https://histio.j2test.com/resources/nih-genetic-and-rare-diseases-info/) - Support patients and their families affected by FHL and raise awareness on this rare disease in France.
- [New York State Hospital Report Card](https://histio.j2test.com/resources/new-york-state-hospital-report-card/) - Myhealthfinder.com is a project reporting on quality of care and providing ratings for every New York State hospital on a wide array of procedures and conditions.
- [Needy Meds Scholarship](https://histio.j2test.com/resources/needy-meds-scholarship/) - Searchable listing of scholarships that are offered for students with specific medical condition(s) or diagnoses.
- [Need Help Paying Bills](https://histio.j2test.com/resources/need-help-paying-bills/) - Find information on assistance programs, charity organizations, and other resources that will provide you help with paying bills, mortgage and debt expenses.
- [National Patient Travel Center](https://histio.j2test.com/resources/national-patient-travel-center/) - Servicing to make referrals and provide "how to get there" assistance for any patient needing to travel to a distant specialized medical facility for evaluation, diagnosis or treatment.
- [National Organization for Rare Disorders (NORD)](https://histio.j2test.com/resources/national-organization-for-rare-disorders-nord/) - Federation of voluntary health organizations dedicated to providing information on the prevention, treatment, and cure of rare "orphan" diseases.
- [National Organization for Rare Disorders (Non-HRD)](https://histio.j2test.com/resources/national-organization-for-rare-disorders-non-hrd/) - Since 1987, NORD has administered Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford.
- [National Marrow Donor Program](https://histio.j2test.com/resources/national-marrow-donor-program/) - The National Marrow Donor Program Office of Patient Advocacy is here to help. On this Web site, you can find information to help you: Talk with your doctor, choose a transplant center, answer questions about caregiving, prepare for life after transplant.
- [National Institutes of Health](https://histio.j2test.com/resources/national-institutes-of-health/) - The National Institute of Health (NIH) Outreach and Education communications offices provide information on NIH programs and activities to the public, scientific community, medical profession, and the media.
- [National Institute of Neurological Disorders and Stroke](https://histio.j2test.com/resources/national-institute-of-neurological-disorders-and-stroke/) - The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.
- [National Family Caregivers Association](https://histio.j2test.com/resources/national-family-caregivers-association/) - The National Family Caregivers Association (NFCA) educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.
- [National Family Caregivers Assoc. - Resources for Caregivers](https://histio.j2test.com/resources/national-family-caregivers-assoc-resources-for-caregivers/) - NFCA offers a virtual library of information and educational materials ranging from national educational campaigns to Tips and Tools for family caregivers to information on agencies and organizations which provide caregiver support.
- [National Energy & Utility Affordability Coalition](https://histio.j2test.com/resources/national-energy-utility-affordability-coalition/) - NEUAC is a broad-based coalition of diverse member organizations and individuals dedicated to heightening awareness of the energy needs of low income energy consumers, fostering partnerships and engaging in other activities to help.
- [Miracle Flights](https://histio.j2test.com/resources/miracle-flights/) - Miracle Flights provides flight assistant anywhere in the U.S. for kids in need of distant medical care. Most recently we have reinstituted our international flight program as well.
- [MedlinePlus](https://histio.j2test.com/resources/medlineplus/) - Quick search of medical literature from 1992 to present or the cancer literature from 1975 to present.
- [Me and My Marrow - Free Downloadable Children's Book](https://histio.j2test.com/resources/me-and-my-marrow-free-downloadable-childrens-book/) - Guides children and their families through the bone marrow donation procedure and offering suggestions on how to cope with such issues as physical changes, social interaction and family relationships.
- [Make-a-Wish Foundation of America](https://histio.j2test.com/resources/make-a-wish-foundation-of-america/) - Grants the wishes of children with terminal or life-threatening illnesses.
- [Make-a-Wish Foundation International](https://histio.j2test.com/resources/make-a-wish-foundation-international/) - Grants the wishes of children with terminal or life-threatening illnesses.
- [LIHEAP Campaign for Home Energy Assistance](https://histio.j2test.com/resources/liheap-campaign-for-home-energy-assistance/) - The Low Income Home Energy Assistance Program (LIHEAP) helps pay the winter heating bills or summer cooling bills of low-income and elderly people.
- [LifeNet](https://histio.j2test.com/resources/lifenet/) - The mission of LifeNet is to provide safe, quality air medical service and patient care to the critically ill and injured.
- [Lifeforce Cryobanks](https://histio.j2test.com/resources/lifeforce-cryobanks/) - Lifeforce Cryobanks, a division of Lifeforce Cryobank Sciences, Inc., is one of the most trusted names in private storage and public donation of cord blood stem cells. Licensed in NY, NJ, and CA.
- [LCH Patient Association - Japan](https://histio.j2test.com/resources/lch-patient-association-japan/) - Langerhans Cell Histiocytosis (LCH) Patients Association in Japan provides information about patients and the activities they are working on to deepen understanding and interest in LCH.
- [Langerhans Cel Histiocytose - Belgium](https://histio.j2test.com/resources/langerhans-cel-histiocytose-belgium/) - LCH Belgium works to inform and support patients and their families and supports scientific research on LCH.
- [Lab Tests Online](https://histio.j2test.com/resources/lab-tests-online/) - Lab Tests Online has been designed to help you, as a patient or family caregiver, to better understand the many clinical lab tests that are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases.
- [American Society of Hematology](https://histio.j2test.com/resources/american-society-of-hematology/) - Links to blood disease resources and related publications, with abstract search.
- [Angel Flight](https://histio.j2test.com/resources/angel-flight/) - Angel Flight was created by a group of pilots who believe in the benefit of volunteering. We will arrange free air transportation for any legitimate, charitable, medically related need.
- [Arizona Life Lines](https://histio.j2test.com/resources/arizona-life-lines/) - Helps find insurance for patients with pre-existing conditions
- [Artemis Society for Histiocytosis - Greece](https://histio.j2test.com/resources/artemis-society-for-histiocytosis-greece/) - The Artemis Association supports patients and their families, fosters research on the causes of histiocytoses and keeps hospitals up to date with the latest treatments.
- [Asociacion Argentina de Histocitosis (A.A.H)](https://histio.j2test.com/resources/asociacion-argentina-de-histocitosis-a-a-h/) - The AAH provides patients, family members and health professionals with information, connection and also works to identify alternatives to improve the quality of life for patients with histiocytic disorders in Argentina and neighboring countries in South America.
- [Asociacion Espanola contra la Histiocitosis (ACHE)](https://histio.j2test.com/resources/asociacion-espanola-contra-la-histiocitosis-ache/) - Spanish Patient Association
- [Association of Oncology Social Work](https://histio.j2test.com/resources/association-of-oncology-social-work/) - These services are designed to assist individuals, families, groups, and communities through counseling, stress and symptom management, care planning, case management, system navigation, education and advocacy.
- [Associazione Italiana Istiocitosi (AIRI)](https://histio.j2test.com/resources/associazione-italiana-istiocitosi-airi/) - AIRI brings together doctors, researchers, parents and volunteers and promotes knowledge and research histiocytosis in Italy.
- [Atypical HUS Foundation](https://histio.j2test.com/resources/atypical-hus-foundation/) - The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder
- [Bear Necessities Pediatric Cancer Foundation](https://histio.j2test.com/resources/bear-necessities-pediatric-cancer-foundation/) - Bear Necessities Pediatric Cancer Foundation is a national organization dedicated to eliminating pediatric cancer and providing hope and support to those who are touched by it.
- [Bereaved Parents of the USA](https://histio.j2test.com/resources/bereaved-parents-of-the-usa/) - The BP/USA offers support, understanding, encouragement and hope to other bereaved parents, siblings and grandparents after the death of their children, brother, sister or grandchildren.
- [Beyond the Cure](https://histio.j2test.com/resources/beyond-the-cure/) - The mission of Beyond the Cure is to help childhood cancer survivors integrate the cancer experience into their new life as survivors and successfully handle the challenges that are ahead of them and to celebrate survivorship.
- [BloodLine](https://histio.j2test.com/resources/bloodline/) - Online resource exclusively dedicated to the fields of hematology and oncology.
- [BMT InfoNet](https://histio.j2test.com/resources/bmt-infonet/) - Blood & Marrow transplant information network.
- [Call 2-1-1](https://histio.j2test.com/resources/call-2-1-1/) - Indiana 211 Partnership's goal is to create a seamless network of information and referral services that enables anyone in Indiana in need of human services to have quick referrals to those who provide them by dialing 2-1-1.
- [Cancer Support Community](https://histio.j2test.com/resources/cancer-support-community/) - The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Also offers free housing for patients traveling for cancer treatment
- [CancerCare](https://histio.j2test.com/resources/cancercare/) - CancerCare is a non-profit organization whose mission is to provide free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved.
- [L'Association Histiocytose France](https://histio.j2test.com/resources/lassociation-histiocytose-france/) - The Association Histiocytose offers moral support to patients and their families, develop information on histiocytosis, ensure a link with doctors and research and raise funds to support research.
- [Catastrophic Illness in Children Relief Fund](https://histio.j2test.com/resources/catastrophic-illness-in-children-relief-fund/) - The Catastrophic Illness in Children Relief Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.
- [Casey Cares](https://histio.j2test.com/resources/casey-cares/) - The foundation provides ongoing and uplifting programming to critically ill children and their families (including siblings!)
- [American Red Cross](https://histio.j2test.com/resources/american-red-cross/) - Health & Safety Training, youth programs and more. They can also help contact your oversease military family in case of emergencies. Please contact your local chapters for more information.
- [American Psychosocial Oncology Society](https://histio.j2test.com/resources/american-psychosocial-oncology-society/) - The APOS has a toll-free Helpline for people with cancer and their caregivers to obtain a local referral for counseling and other support services to manage cancer-related distress.
- [American Childhood Cancer Organization](https://histio.j2test.com/resources/american-childhood-cancer-organization/) - Our mission is to provide information and support for children and adolescents with cancer and their families, to provide grassroots leadership through advocacy and awareness, and to support research leading to a cure.
- [American Cancer Society](https://histio.j2test.com/resources/american-cancer-society/) - For over 100 years, the American Cancer Society (ACS) has worked relentlessly to save lives and create a world with less cancer. Together with millions of our supporters worldwide, we help people stay well and get well and find cures.
- [American Bone Marrow Donor Registry](https://histio.j2test.com/resources/american-bone-marrow-donor-registry/) - The ABMDR's mission is to educate and recruit an adequate, viable source of well-informed potential marrow donors and effectively maintain the associated donor records and to provide comprehensive assistance to patient and physician throughout the process
- [Alabama State Employee Insurance Board](https://histio.j2test.com/resources/alabama-state-employee-insurance-board/) - Administering Health Benefits with excellence.
- [Alabama Department of Public Health](https://histio.j2test.com/resources/alabama-department-of-public-health/) - The following programs are offered through the Department of Public Health: Social services; family assessment needs; family care; and child treatment.
- [Alabama Department of Human Resources](https://histio.j2test.com/resources/alabama-department-of-human-resources/) - The following programs are offered through the Department of Human Resources: Temporary assistance for needy families; general assistance; food stamps; childcare
- [Air Care Alliance](https://histio.j2test.com/resources/air-care-alliance/) - The Air Care Alliance is a nationwide association of humanitarian flying organizations dedicated to community service. Includes a list of companies that will provide free transportation to patients who need it.

## Events

- [Volunteer Meetup](https://histio.j2test.com/event/volunteer-meetup/) - Lorem ipsum dolor sit amet, eam reque quaestio expetendis te. Meis laboramus ne per, sed ex choro tempor habemus. Ad nam consetetur ullamcorper, ne vim inani apeirian maiestatis, ei iriure dolorum democritum eos. Integre malorum tractatos quo cu, quo cu insolens incorrupte, ex duo elitr petentium. Summo aeque eleifend est at, ex duo mucius eruditi.

## Categories

- [Uncategorized](https://histio.j2test.com/category/uncategorized/)

## Categories

- [Transportation](https://histio.j2test.com/resources_categories/transportation/)
- [Financial Support](https://histio.j2test.com/resources_categories/financial-support/)
- [Home & Family Support](https://histio.j2test.com/resources_categories/home-family-support/)
- [Insurance/Disability Assistance](https://histio.j2test.com/resources_categories/insurance-disability-assistance/)
- [BMT/Blood Registries](https://histio.j2test.com/resources_categories/bmt-blood-registries/)
- [Medical Organizations](https://histio.j2test.com/resources_categories/medical-organizations/)
- [Emotional Support](https://histio.j2test.com/resources_categories/emotional-support/)
- [International Histio Organization](https://histio.j2test.com/resources_categories/international-histio-organization/)
- [Prescription/Medication Assistance](https://histio.j2test.com/resources_categories/prescription-medication-assistance/)
- [Disease Management](https://histio.j2test.com/resources_categories/disease-management/)
- [Recreational Programs](https://histio.j2test.com/resources_categories/recreational-programs/)
- [Housing Support](https://histio.j2test.com/resources_categories/housing-support/)
- [Genomic Profiling](https://histio.j2test.com/resources_categories/genomic-profiling/)

## Countries

- [United States](https://histio.j2test.com/resources_countries/united-states/)
- [Sweden](https://histio.j2test.com/resources_countries/sweden/)
- [United Kingdom](https://histio.j2test.com/resources_countries/united-kingdom/)
- [Greece](https://histio.j2test.com/resources_countries/greece/)
- [Argentina](https://histio.j2test.com/resources_countries/argentina/)
- [Italy](https://histio.j2test.com/resources_countries/italy/)
- [Belgium](https://histio.j2test.com/resources_countries/belgium/)
- [Brazil](https://histio.j2test.com/resources_countries/brazil/)
- [Canada](https://histio.j2test.com/resources_countries/canada/)
- [France](https://histio.j2test.com/resources_countries/france/)
- [Germany](https://histio.j2test.com/resources_countries/germany/)
- [Japan](https://histio.j2test.com/resources_countries/japan/)
- [Netherlands](https://histio.j2test.com/resources_countries/netherlands/)
- [South Africa](https://histio.j2test.com/resources_countries/south-africa/)
- [Spain](https://histio.j2test.com/resources_countries/spain/)
- [India](https://histio.j2test.com/resources_countries/india/)
- [Lebanon](https://histio.j2test.com/resources_countries/lebanon/)

## Country

- [United States](https://histio.j2test.com/physicians_country/united-states/)
- [Canada](https://histio.j2test.com/physicians_country/canada/)
- [United Kingdom](https://histio.j2test.com/physicians_country/united-kingdom/)

## Histiocyte Society Member

- [Yes](https://histio.j2test.com/physicians_member/yes/)

## Histiocytic Disorder

- [LCH - Adults](https://histio.j2test.com/physicians_disease/lch-adults/)
- [LCH - Children](https://histio.j2test.com/physicians_disease/lch-children/)

## Specialty

- [Dermatology](https://histio.j2test.com/physicians_specialty/dermatology/)

## State

- [Alabama](https://histio.j2test.com/physicians_state/alabama/)
- [New Jersey](https://histio.j2test.com/physicians_state/nj/)

## States

- [National](https://histio.j2test.com/resources_states/national/)
- [Alabama](https://histio.j2test.com/resources_states/alabama/)
- [Pennsylvania](https://histio.j2test.com/resources_states/pennsylvania/)
- [Alaska](https://histio.j2test.com/resources_states/alaska/)
- [Arizona](https://histio.j2test.com/resources_states/arizona/)
- [Arkansas](https://histio.j2test.com/resources_states/arkansas/)
- [California](https://histio.j2test.com/resources_states/california/)
- [Colorado](https://histio.j2test.com/resources_states/colorado/)
- [Connecticut](https://histio.j2test.com/resources_states/connecticut/)
- [Delaware](https://histio.j2test.com/resources_states/delaware/)
- [District of Columbia](https://histio.j2test.com/resources_states/district-of-columbia/)
- [Florida](https://histio.j2test.com/resources_states/florida/)
- [Georgia](https://histio.j2test.com/resources_states/georgia/)
- [Hawaii](https://histio.j2test.com/resources_states/hawaii/)
- [Idaho](https://histio.j2test.com/resources_states/idaho/)
- [Illinois](https://histio.j2test.com/resources_states/illinois/)
- [Indiana](https://histio.j2test.com/resources_states/indiana/)
- [Iowa](https://histio.j2test.com/resources_states/iowa/)
- [Kansas](https://histio.j2test.com/resources_states/kansas/)
- [Kentucky](https://histio.j2test.com/resources_states/kentucky/)
- [Louisiana](https://histio.j2test.com/resources_states/louisiana/)
- [Maine](https://histio.j2test.com/resources_states/maine/)
- [Maryland](https://histio.j2test.com/resources_states/maryland/)
- [Massachusettes](https://histio.j2test.com/resources_states/massachusettes/)
- [Michigan](https://histio.j2test.com/resources_states/michigan/)
- [Minnesota](https://histio.j2test.com/resources_states/minnesota/)
- [Mississippi](https://histio.j2test.com/resources_states/mississippi/)
- [Missouri](https://histio.j2test.com/resources_states/missouri/)
- [Montana](https://histio.j2test.com/resources_states/montana/)
- [Nebraska](https://histio.j2test.com/resources_states/nebraska/)
- [Nevada](https://histio.j2test.com/resources_states/nevada/)
- [New Hampshire](https://histio.j2test.com/resources_states/new-hampshire/)
- [New Jersey](https://histio.j2test.com/resources_states/new-jersey/)
- [New Mexico](https://histio.j2test.com/resources_states/new-mexico/)
- [New York](https://histio.j2test.com/resources_states/new-york/)
- [North Carolina](https://histio.j2test.com/resources_states/north-carolina/)
- [North Dakota](https://histio.j2test.com/resources_states/north-dakota/)
- [Ohio](https://histio.j2test.com/resources_states/ohio/)
- [Oklahoma](https://histio.j2test.com/resources_states/oklahoma/)
- [Oregon](https://histio.j2test.com/resources_states/oregon/)
- [Rhode Island](https://histio.j2test.com/resources_states/rhode-island/)
- [South Carolina](https://histio.j2test.com/resources_states/south-carolina/)
- [South Dakota](https://histio.j2test.com/resources_states/south-dakota/)
- [Tennessee](https://histio.j2test.com/resources_states/tennessee/)
- [Texas](https://histio.j2test.com/resources_states/texas/)
- [Utah](https://histio.j2test.com/resources_states/utah/)
- [Vermont](https://histio.j2test.com/resources_states/vermont/)
- [Virginia](https://histio.j2test.com/resources_states/virginia/)
- [Washington](https://histio.j2test.com/resources_states/washington/)
- [West Virginia](https://histio.j2test.com/resources_states/west-virginia/)
- [Wisconsin](https://histio.j2test.com/resources_states/wisconsin/)
- [Wyoming](https://histio.j2test.com/resources_states/wyoming/)

## Topics

- [LCH](https://histio.j2test.com/grants_topics/lch/)
- [Rare Histiocytic Disorders and Other Topics](https://histio.j2test.com/grants_topics/rare-histiocytic-disorders-and-other-grants-awarded/)
- [HLH/FEL/FHL](https://histio.j2test.com/grants_topics/hlh-fel-fhl/)
- [RDD](https://histio.j2test.com/grants_topics/rdd/)
- [ECD](https://histio.j2test.com/grants_topics/ecd/)
- [JXG](https://histio.j2test.com/grants_topics/jxg/)

## Years

- [2018](https://histio.j2test.com/grants_years/2018/)
- [2012](https://histio.j2test.com/grants_years/2012/)
- [2006](https://histio.j2test.com/grants_years/2006/)
- [2001](https://histio.j2test.com/grants_years/2001/)
- [2009](https://histio.j2test.com/grants_years/2009/)
- [2000](https://histio.j2test.com/grants_years/2000/)
- [2002](https://histio.j2test.com/grants_years/2002/)
- [2003](https://histio.j2test.com/grants_years/2003/)
- [2004](https://histio.j2test.com/grants_years/2004/)
- [2007](https://histio.j2test.com/grants_years/2007/)
- [2011](https://histio.j2test.com/grants_years/2011/)
- [2005](https://histio.j2test.com/grants_years/2005/)
- [2013](https://histio.j2test.com/grants_years/2013/)
- [2014](https://histio.j2test.com/grants_years/2014/)
- [2008](https://histio.j2test.com/grants_years/2008/)
- [2010](https://histio.j2test.com/grants_years/2010/)
- [2016](https://histio.j2test.com/grants_years/2016/)
- [2015](https://histio.j2test.com/grants_years/2015/)
- [2017](https://histio.j2test.com/grants_years/2017/)
- [2019](https://histio.j2test.com/grants_years/2019/)
- [1992](https://histio.j2test.com/grants_years/1992/)
- [2021](https://histio.j2test.com/grants_years/2021/)
- [1993](https://histio.j2test.com/grants_years/1993/)
- [1994](https://histio.j2test.com/grants_years/1994/)
- [1996](https://histio.j2test.com/grants_years/1996/)
- [1995](https://histio.j2test.com/grants_years/1995/)
- [1997](https://histio.j2test.com/grants_years/1997/)
- [1998](https://histio.j2test.com/grants_years/1998/)
- [1999](https://histio.j2test.com/grants_years/1999/)
- [2020](https://histio.j2test.com/grants_years/2020/)
- [2022](https://histio.j2test.com/grants_years/2022/)
- [2023](https://histio.j2test.com/grants_years/2023/)
- [2024](https://histio.j2test.com/grants_years/2024/)