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

To contact us directly, please email:

Visit the FSHD Society Events calendar to search for upcoming events in your area!

Don’t forget to follow us on FACEBOOK!

Please join us! Simply fill out the form below to become a member of the Greater Philadelphia chapter: