top of page

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.

AA Logo H-Color.jpg
CureSMA.png
gaucher.png
SoftBones.jpg
CMT.png
FARA.png
everylife.jpg
NPAF.png
BCAN-logo-revised-tagline - Full Color.p
CURE RARE DISEASE.png
Squared_Color3.jpg
cure-duchenne-logo-1.png
Global genes.jpeg
aadc.jpg
barth-foundation-logo-hrz.png
PPMD_Logo_Tagline_FullColor_RGB_Bg[4].jpg

​​​

  • 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

bottom of page