FSHD Society Facebook Page

Like and Follow us to get the latest news and updates from the FSHD Society, post questions, share information, and share our posts with your network. Join our online community via our Facebook Page.

There are also several volunteer-run private Facebook groups. These groups are private, and posts made on them will not appear on your public Facebook timeline. If you are interested in engaging in these groups, visit them on Facebook and request to join. Their administrator will take it from there.

FSHD Society on Twitter

Our official Twitter account provides news, event information, and shares Tweets of interest. You can post questions and contact us via our Twitter account.

FSHD Society on Instagram

FSHD patients and families live rich and full lives, regardless of their diagnosis. On our Instagram we highlight and celebrate the indomitable spirit of our FSHD community

FSHD Society on YouTube

Our official YouTube channel offers education videos that could be of great benefit to patients and families, as well as informational videos about the FSHD Society, event recap videos and more.

Each month we release two episodes: Profiles in FSHD premieres on the second Tuesday and Hot Off the Presses premieres on the fourth Thursday.

You can watch the show on YouTube @FSHDSociety or Facebook @FSHDSociety, or listen at your convenience wherever you like to stream your favorite podcasts. Learn More