RARE Patient Advocacy Symposium in Philadelphia
Cure AHC Family Support Chair Stacie Confair attended the RARE Patient Advocacy Symposium, a half-day patient advocate education program on May 6 in Philadelphia, co-sponsored by Global Genes and the Penn Medicine Orphan Disease Center. Compelling case studies were delivered by patient community and the biotech industry representatives about participating in drug development, keys to advancing research and directing research funding for their rare disease community, and nonprofit organizational growth and development. Speakers representing Emily’s Entourage, Friedreich’s Ataxia, Autism Speaks, Curing Retinal Blindness Foundation, Raptor Pharmaceuticals, Castleman Disease Collaborative Network and the LAM Foundation participated in this program. Thank you Stacie for helping us be the best advocates we can be for AHC families!