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Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome Network. Appell founded the Network in 1992 in her basement after her daughter was diagnosed. Today she works for the Network full time and collects no salary so that more money can go to HPS research. Through her advocacy efforts, there is now a clinical trial underway for a treatment for HPS. This is Appell in her home office
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