NGF Blog


RARE Patient Advocacy Symposium May 6, 2016 in Philadelphia

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: Should the registration cost be a barrier to advocates, please contact Samantha Charleston at Visit us online for the full agenda!

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