Executive Director Letters
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…
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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…
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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…
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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,…
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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…
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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…
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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…
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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…
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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…
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