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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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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