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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Please join us! Simply fill out the form in the sidebar to become a member of the Greater Philadelphia chapter.
Upcoming Events › Greater Philadelphia Chapter Events
Please mark your calendars for our first Chapter Meeting of 2020. Come join us to discuss the fundraiser currently being planned by Taylor Quigg! We will meet at the Wissahickon Public Library on Saturday, February 29th (Time TBD) We hope to see you there! ~Bill Maclean, Greater Philadelphia Chapter Director PhiladelphiaChapter@fshdsociety.orgFind out more »
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…Find out more »