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FSH Society News

Many “Firsts” for the 26th Annual FSHD International Research Congress

The world’s premier conference on the rare muscle disease sets attendance records as it convenes for the first time in Europe  The FSH Society announced the opening today of its 26th annual International Research Congress (IRC) in Marseille, France. The conference is widely seen as the premier global platform for the discussion and dissemination of … Read more of “Many “Firsts” for the 26th Annual FSHD International Research Congress” »

TikTok to participate in World FSHD Day

TikTok, the video-sharing app formerly known as, is the world’s fastest growing social networking platform. This year, TikTok is participating in World FSHD Day on June 20th. The relationship was cultivated by our friends at FSHD China. TikTok will be reaching out to Chinese pop stars and other celebrities, who will share a 15-second … Read more of “TikTok to participate in World FSHD Day” »

Video: Stance-control brace webinar

Here is the recording of our June 8th webinar with Abbey Downing, a certified prosthetist/orthotist from the Hanger Clinic in Wethersfield, CT. Ms. Downing has worked with Kathy Senecal, a client with FSHD, on fitting her with a brace. She provides an excellent explanation of the mechanics of this type of brace and the types … Read more of “Video: Stance-control brace webinar” »

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Committed To Accountability & Transparency

FSH Society is committed to excellence and accountability to our donors.

Milestones in Advocacy

FSH Society has been instrumental in rewriting (2001) and helping reauthorize (2008 and 2014) the Muscular Dystrophy Community Assistance Research and Education Act.

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