Join rare disease patient advocates and caregivers to learn and network!
Register today to join Global Genes and the UPenn’s Orphan Disease Center are collaborating for the first time on the RARE Patient Advocacy Symposium, a half-day patient advocate education program on May 6, 2016 in Philadelphia at the Sheraton Philadelphia University City Hotel. Advocates will learn from compelling case studies 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. This program is made possible with support from REGENXBIO. Speakers include:
Dr. David Fajgenbaum, Castleman Disease Collaborative Network & Asst. Professor and Associate Director, Orphan Disease Center, UPenn
Rob Ring, Ph.D. Autism Speaks
Kristin Smedley, Curing Retinal Blindness Foundation
Kyle Bryant, patient advocate, Friedreich’s Ataxia
Kristina Broadbelt, Raptor Pharmaceuticals
Emily Kramer-Golinkoff, Emily’s Entourage
Sue Sherman, LAM Foundation
Registration for advocates for the program is $20.00, and all registration proceeds will be split evenly to support the Global Genes RARE Patient Impact Grant Program and UPenn ODC’s Million Dollar Bike Ride program that funds research.
Register here: https://upenn.irisregistration.com/Home/Site?code=RPAS2016. Should the registration cost be a barrier to advocates, please contact Samantha Charleston at scharle@mail.med.upenn.edu. Visit us online for the full agenda!
