Greater Philadelphia Chapter

Welcome to the Greater Philadelphia Chapter page! 

We officially launched our Chapter on Sunday, Sept. 29th, 2018. Thank you to everyone who made it to our event! We look forward to seeing you all again soon – please stay tuned for future meetings and events! Join our Chapter using the form below to stay in touch.

We hope to help patients, caregivers, and their families 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.

To contact us directly, please email:

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

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