Rare Disease Advisory Panel – PCORI Fall Meetings

Deanna pictured at PCORI Rare Disease Advisory Panel Meeting

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…

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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…

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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…

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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…

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Ways to Advocate for Rare

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

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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