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"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 knowledge, understanding, and treatment options for histiocytosis. Five years later, I am amazed at how the conversation continues to evolve, whereas we are exploring harmonization, collaboration, pursuing natural history studies, seeing positive outcomes, and have over 3 FDA approved therapies for histiocytosis."

-Deanna Fournier, Executive Director

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Impact

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For a great showing of all the impact created by your donations this year, be sure to catch the recording of this year's HopeCast on Facebook, YouTube and Linkedin.

The 2023 Impact Report is now live!
Click here to view it

Stories

Hover over the photos to read what Histiocytosis Association programs benefited these patients and families.

In October 2020, our family faced a daunting challenge when our son was diagnosed with CNS HLH. During this difficult time, we found histio.org. The website provided us with essential insights and helped us formulate important questions for our medical team. The team at histio.org offered practical and comforting support throughout our journey. Deanna, the Executive Director, personally reached out to our family, which significantly eased our minds. Her genuine care and dedication were truly remarkable, making a meaningful difference in our experience. Becoming ambassadors for the association was a natural choice for us, as it's a place where we believe we can truly make a difference by helping other families navigate the challenges of HLH.
In October 2020, our family faced a daunting challenge when our son was diagnosed with CNS HLH. During this difficult time, we found histio.org. The website provided us with essential insights and helped us formulate important questions for our medical team. The team at histio.org offered practical and comforting support throughout our journey. Deanna, the Executive Director, personally reached out to our family, which significantly eased our minds. Her genuine care and dedication were truly remarkable, making a meaningful difference in our experience. Becoming ambassadors for the association was a natural choice for us, as it's a place where we believe we can truly make a difference by helping other families navigate the challenges of HLH.
I have been a part of numerous Histiocytosis Association programs that benefited me. I joined the podcast early on as an assistant to help aid in interview questions and seek out important candidates to have on the show. Not only was I helping to facilitate educational conversations, but I was also learning a ton from each guest speaker we had. My role doubled as a guide and a discoverer to tons of new and critical information that was beneficial to histiocytosis. I also gained knowledge and understanding from the monthly ambassador meetings that were held. On behalf of the HA, I was able to venture out and attend a few rare disease conferences hosted by Global Genes where I networked and met some invaluable resources all coming together to achieve the same goal— earlier and more accurate diagnoses as well as faster cures. These conferences helped open my eyes even more to the world of rare disease and provided a space where I realized I wasn’t as alone as I used to feel. I am nothing but grateful to have been a part of such an inspiring team of people.
I have been a part of numerous Histiocytosis Association programs that benefited me. I joined the podcast early on as an assistant to help aid in interview questions and seek out important candidates to have on the show. Not only was I helping to facilitate educational conversations, but I was also learning a ton from each guest speaker we had. My role doubled as a guide and a discoverer to tons of new and critical information that was beneficial to histiocytosis. I also gained knowledge and understanding from the monthly ambassador meetings that were held. On behalf of the HA, I was able to venture out and attend a few rare disease conferences hosted by Global Genes where I networked and met some invaluable resources all coming together to achieve the same goal— earlier and more accurate diagnoses as well as faster cures. These conferences helped open my eyes even more to the world of rare disease and provided a space where I realized I wasn’t as alone as I used to feel. I am nothing but grateful to have been a part of such an inspiring team of people.
The Histiocytosis Association's Histio Ambassadorship program has helped me to learn how to use my voice to help others affected by histiocytic disorders. Not only have I been given the opportunity to help others who also suffer from histiocytosis, but I am also more confident in myself, all while being given the honor of being a part of a community of ambassadors that continually inspire me to do my very best.
The Histiocytosis Association's Histio Ambassadorship program has helped me to learn how to use my voice to help others affected by histiocytic disorders. Not only have I been given the opportunity to help others who also suffer from histiocytosis, but I am also more confident in myself, all while being given the honor of being a part of a community of ambassadors that continually inspire me to do my very best.
I was diagnosed with a histiocytic disorder in February 2017 but only learned about/got more involved with the Association in Summer 2022. In the short time I’ve been involved, my life has changed for the better. The Ambassador program has been so beneficial to me and has given me a sense of community. When I was newly diagnosed at 13 and going through my scans, steroid treatment, doctors appointments, etc, I felt so alone and I did not know anyone else who had experience with a histiocytic disorder. Since being involved in Ambassadors, I’ve made so many amazing connections and wonderful friendships through my fellow Ambassadors who motivate and inspire me. It is so refreshing to be able to interact with fellow Histio patients and have deep, meaningful conversations surrounding the different topics we have each meeting to discuss. I feel the community I’ve gained from the Histiocytosis Association has healed a part of my teenage self who felt so alone and was struggling. Everyone from the Association has also supported my future career goals and ambitions which I appreciate so much.
I was diagnosed with a histiocytic disorder in February 2017 but only learned about/got more involved with the Association in Summer 2022. In the short time I’ve been involved, my life has changed for the better. The Ambassador program has been so beneficial to me and has given me a sense of community. When I was newly diagnosed at 13 and going through my scans, steroid treatment, doctors appointments, etc, I felt so alone and I did not know anyone else who had experience with a histiocytic disorder. Since being involved in Ambassadors, I’ve made so many amazing connections and wonderful friendships through my fellow Ambassadors who motivate and inspire me. It is so refreshing to be able to interact with fellow Histio patients and have deep, meaningful conversations surrounding the different topics we have each meeting to discuss. I feel the community I’ve gained from the Histiocytosis Association has healed a part of my teenage self who felt so alone and was struggling. Everyone from the Association has also supported my future career goals and ambitions which I appreciate so much.
I am very thankful to the Histiocytosis Association. The whole team has been kind, invested, and committed to raise awareness, unite histio community, and continue to contribute to research. As a patient and histio ambassador I've been impacted by our director, Deanna Fournier, she dedicates her time and energy to our community. She gives freely and I am grateful for her. I've also been greatly impacted by our peer support calls. I have met amazing people, we have connected, we have shared our histio journey, its challenges, our life hacks and tools on how to better manage our rare disease. I'm thankful for each and every one I have connected with. You have touched my life. Lastly, I am also blessed to be involved in the ambassador program. I've gotten to meet amazing ambassadors, who like me, are or have been on this journey and have a passion to impact those affected by this disease. I have learned so much from them and I am enamored at their tenacity, dedication, resilience, and hope. The ambassador program offers great benefits to continue to learn more of the disease, the research advances, connections with other histio families, and unite in this passion to continuously deposit hope in others.
I am very thankful to the Histiocytosis Association. The whole team has been kind, invested, and committed to raise awareness, unite histio community, and continue to contribute to research. As a patient and histio ambassador I've been impacted by our director, Deanna Fournier, she dedicates her time and energy to our community. She gives freely and I am grateful for her. I've also been greatly impacted by our peer support calls. I have met amazing people, we have connected, we have shared our histio journey, its challenges, our life hacks and tools on how to better manage our rare disease. I'm thankful for each and every one I have connected with. You have touched my life. Lastly, I am also blessed to be involved in the ambassador program. I've gotten to meet amazing ambassadors, who like me, are or have been on this journey and have a passion to impact those affected by this disease. I have learned so much from them and I am enamored at their tenacity, dedication, resilience, and hope. The ambassador program offers great benefits to continue to learn more of the disease, the research advances, connections with other histio families, and unite in this passion to continuously deposit hope in others.
The Histiocytosis Association Ambassador Program is a family-like community, which reminds Histio Warriors and families that we are NOT ALONE - Something easily forgotten when you are that "1 in a million" The program has helped me to embrace my experience with secondary HLH and turn what used to be a “taboo” topic into a story that I am proud to share. Not only has this helped me to raise awareness for the community, but it has also given me the courage and strength to take back control of my mental health, which has suffered since my diagnosis back in 2013. I'm incredibly grateful to be a part of the Program and I am excited to see what we can achieve in the years to come!
The Histiocytosis Association Ambassador Program is a family-like community, which reminds Histio Warriors and families that we are NOT ALONE - Something easily forgotten when you are that "1 in a million" The program has helped me to embrace my experience with secondary HLH and turn what used to be a “taboo” topic into a story that I am proud to share. Not only has this helped me to raise awareness for the community, but it has also given me the courage and strength to take back control of my mental health, which has suffered since my diagnosis back in 2013. I'm incredibly grateful to be a part of the Program and I am excited to see what we can achieve in the years to come!
I can't thank the Histiocytosis Association enough for the incredible impact they've had on our family through a couple of their programs. The first one, those message boards from over 15 years ago, were a real source of comfort and knowledge. I remember spending hours reading about histio and finding hope in the stories shared by other patients. The second program, the Youth Ambassador program, is something we're truly grateful for. My son was diagnosed with LCH as a baby, so he couldn't remember anything about what happened to him. But 16 years later, being part of the Youth Ambassador program has allowed him to learn about his fight with LCH, advocate for histio research funding with our senators, and even organize a fundraiser for the association. It's been a life-changing experience for him and an incredible way for us to give back. We're just so appreciative of the Histiocytosis Association for providing these amazing programs for my son and our entire family. It's made a real difference in our lives.
I can't thank the Histiocytosis Association enough for the incredible impact they've had on our family through a couple of their programs. The first one, those message boards from over 15 years ago, were a real source of comfort and knowledge. I remember spending hours reading about histio and finding hope in the stories shared by other patients. The second program, the Youth Ambassador program, is something we're truly grateful for. My son was diagnosed with LCH as a baby, so he couldn't remember anything about what happened to him. But 16 years later, being part of the Youth Ambassador program has allowed him to learn about his fight with LCH, advocate for histio research funding with our senators, and even organize a fundraiser for the association. It's been a life-changing experience for him and an incredible way for us to give back. We're just so appreciative of the Histiocytosis Association for providing these amazing programs for my son and our entire family. It's made a real difference in our lives.