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Patient Advisory Council

PATIENT ADVOCACY ADVISORY COUNCIL

Patient advocates across a number of diseases contribute important perspectives that help ensure patients’ interests are at the center of our work.

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Khrystal Davis, Rare Disease Advocate, Mother of son w/SMA, Founder of Texas Rare Alliance

Jenn McNary, Patient Advocate & Consultant, Founder, One Rare

Lauren Holder, Huntington’s Disease Patient Advocate and Producer/Host of Help 4 HD Live Podcast
Rolf Benirschke, Survivor and Patient Advocate Crohn’s Disease, Ulcerative Colitis, Colorectal & Bladder Cancer
Jennifer Handt, Duchenne Parent-Advocate and Founder, Charlie's Cure
Frankie Bjorklund, Mother and Angelman Syndrome Patient Advocate

Corporate Advisory Council

Scientific, Academic & Medical Council

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