RARE Patient Advocacy Symposium May 6, 2016 in Philadelphia
Global Genes and the Penn Medicine 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. Speakers representing Emily's Entourage, Friedreich's Ataxia, Autism Speaks, Curing Retinal Blindness Foundation, Raptor Pharmaceuticals, Castleman Disease Collaborative Network and the LAM Foundation are participating in this program! Come and network with rare advocates and learn best practices from the community!
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 the Orphan Disease Center's Million Dollar Bike Ride grant program that funds research. Register here. Should the registration cost be a barrier to advocates, please contact Samantha Charleston at scharle@mail.med.upenn.edu. For questions about the program, please reach out to Kym Kilbourne at kymk@globalgenes.org.
Thank you!
Samantha Charleston
Assistant Director
Orphan Disease Center
University of Pennsylvania
Phone: 215-573-6822
Email: scharle@mail.med.upenn.edu