Welcome to the Greater Philadelphia Chapter!
Thank you for visiting the Greater Philadelphia Chapter of the FSHD Society which officially launched in September 2018. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
Join Us for Our Next Chapter Meeting on Saturday, October 19th
The topic for this meeting is Clinical Trial Readiness and we will be having our guest speaker Michelle Mellion, Medical Director from Fulcrum Therapeutics, to join us. For more details on this meeting and to RSVP, click HERE.
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Upcoming Events › Greater Philadelphia Chapter Events
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…Find out more »