Executive Director Letters

A Guide to Genetic Testing

June 22, 2023

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…

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Histio Ambassadors Champion Advocacy at the World Orphan Drug Congress

June 8, 2023

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…

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Ways to Advocate for Rare

May 25, 2023
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…

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A Tale of Three Conferences

May 11, 2023

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…

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Meet the Histiocytosis Association Team!

April 27, 2023

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…

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Scoring New Research Proposals

April 13, 2023

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…

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National Institutes of Health: Partners in the Fight

March 16, 2023
National Institutes of Health Partnerships and rare disease education

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.…

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Adding Dollars to Academics: The Histio Student Scholarship Program

March 2, 2023

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…

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Wild Zebras Running Free: Rare Disease Day 2023

February 16, 2023
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…

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2022 Histiocytosis Association Research Grant Recipients

February 2, 2023
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…

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