Online Communities

Facebook LogoFSHD 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.

Instagram logoFSHD 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

Twitter LogoFSHD 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 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. 

There are also several volunteer-run private Facebook groups including “FSH Friends,” “Teens and Young Adults with FSHD,” and “FSHD Parents” (for parents of a child with FSHD). These groups are private, and posts made on them will not appear on your public Facebook timeline. To join one of these groups, please fill out and submit the form below.


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