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FSH Society News

$133,254 awarded to FSHD Clinical Trials Research Network

The FSH Society has awarded a grant for a second year of support for the FSHD Clinical Trials Research Network (CTRN), through the coordinating center based at the University of Kansas Medical Center, Fairway, Kansas. In awarding the grant, the Society notes the value of having a standing, research and trial-ready infrastructure for FSH muscular … Read more of “$133,254 awarded to FSHD Clinical Trials Research Network” »

Rare Disease Day Rare Talent Challenge

This year, to celebrate Rare Disease Day, taking place on Wednesday, February 28, we will be hosting a viral photo and video challenge! Share your rare talents and help us bring the FSH Society into the larger conversation around rare diseases. Here’s how it works: Decide on a rare talent–whether you can sing Puccini, juggle … Read more of “Rare Disease Day Rare Talent Challenge” »

Has the Design for All moment arrived?

The movement for universal design–clothing, furniture, medical devices, housewares, and architecture that are accessible, beautiful, and nonstigmatizing–is gaining steam, enough to warrant an exhibition at the Cooper Hewitt Smithsonian Design Museum, as reported by the New York Times. These companies and their products deserve support and recognition by our community. We would love to compile … Read more of “Has the Design for All moment arrived?” »

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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