Community, Reference and Reading Room

Come In and Get Acquainted with FSHD!

Receiving a diagnosis of FSHD is difficult and challenging. We are here to let you know that you are not alone with your disease and that there are others out there facing the same trials and tribulations.  Many people say that when they find the FSH Society community, it’s like coming home to a long lost tribe.

The FSH Society offers online and volunteer support groups (also known as self-help groups and peer-support groups) -- a place to meet, share and acquire knowledge about FSHD from patients, families, caregivers and health professionals.

As a centerpiece of our community dialogue, every other year the Society organizes and sponsors a patient/researcher conference.  Join us this year to learn, to network, to share your insights and experiences, and to have fun.

The FSH Society newsletter, ‘The FSH Watch,’ describes the latest scientific research on FSHD, chronicles the Society’s advocacy efforts, features insightful articles written by patients and their families about living with FSHD, contains useful medical and practical information and offers a way to stay connected with the community.  Please retrace our journey and explore the treasure trove of experiences and stories in back issues of The FSH Watch. 

The FSH Society online community helps you discover what’s happening in FSHD. You can locate facts, research, ideas and events, find out about fundraisers and learn how you can make a difference when you get involved with FSH Society projects and efforts.

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