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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

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