FSHD Society
"What is the FSHD Society?
We are the world’s largest grassroots network of individuals with FSH muscular dystrophy, their families, and research activists. The FSHD Society was founded in 1991 by two patients, Daniel Perez and Steve Jacobsen, sitting around a kitchen table.
Today, the FSHD Society consists of dozens of volunteer-led chapters across the US and Canada, as well as affiliates across the globe. Through an amazing staff-volunteer-stakeholder partnership, we deliver education; drive outreach; fund scientific and medical research; and advocate for increased government and industry investment in FSHD.
The FSHD Society is deeply committed to working with ingenuity and integrity to accelerate research leading to treatments for by 2025 and eventually a cure."
https://www.fshdsociety.org/ and they are located in Randolph, MA U.S.A.
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