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The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. As one of the most progressive organizations tackling FSHD, we have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Overview
Location
United States, Massachusetts
Employees
11-50
Phone
+1 781-301-6060
Founded date
1991
Mentions in press and media 16
| Date | Title | Description |
| Sign up to see | Sign up to see | Sign up to see |
| Jun 23, 2025 | New Research Portal Offers Access to Longitudinal FSHD Patient Data | The BetterLife Research Gateway is a new data portal developed by the FSHD Society to accelerate FSHD research. BetterLife Research Gateway offers unprecedented access to real-world data from people living with FSHD RANDOLPH, Mass., June 23... |
| Sep 4, 2024 | FSHD Society unites thousands to fight FSH Muscular Dystrophy with 7th annual Walk & Roll | The Walk & Roll to Cure FSHD will take place in cities across North America. Find a location near you at FSHDSociety.org/WalkRoll! Fundraising events across North America bring hope and connection to families impacted by a common form o... |
| Oct 22, 2023 | The founder of Lululemon is spending $100 million to try to beat the super rare disease that's destroying his muscles | Chip Wilson, the founder of Lululemon. Reuters Redeem now Chip Wilson, the founder of Lululemon, has FSHD, a rare form of muscular dystrophy. He's investing $100 million into finding a cure through his venture philanthropy fund, Solve FSHD.... |
| Sep 14, 2023 | Filmmakers to champion the FSHD Society's Los Angeles Walk & Roll to Cure FSH muscular dystrophy | Meet the film-making team at the Los Angeles Walk & Roll this year. For the team behind the forthcoming movie, Good Bad Things, it's personal LOS ANGELES, Sept. 14, 2023 /PRNewswire-PRWeb/ -- The team behind the forthcoming movie, "... |
| Jun 19, 2023 | World FSHD Alliance annual summit convenes in Milan, Italy | "“To face the urgent challenges in clinical trials and treatment access, we must bring all stakeholders together in an effective, collaborative, and transparent network." - Mark Stone, CEO of the FSHD Society RANDOLPH, Mass. (PRWE... |
| Jun 15, 2023 | FSHD Society is bringing the world together this month in Milan, Italy | “Our meetings serve a vital role in making sure that all stakeholders are working together to speed up the delivery of treatments to our families." - Jamshid Arjomand, PhD, chief science officer RANDOLPH, Mass. (PRWEB) June 15, 2023 Th... |
| Oct 18, 2022 | FSHD Society establishes genetic testing program to advance clinical trial readiness for facioscapulohumeral muscular dystrophy | "I came back with a positive blood test [for] FSHD Type 1. I am ready and willing to take part in any clinical trials as soon as I'm able.” - Patient 1 RANDOLPH, Mass. (PRWEB) October 18, 2022 The FSHD Society has launched a direct-to-... |
| Jun 7, 2022 | FSHD Society is convening the world this month in Orlando, Florida | “Our meetings serve a vital role in making sure that all of our stakeholders are working together, speaking with one voice, to speed up the delivery of effective treatments to our families.” - Mark Stone, President & CEO, FSHD Society R... |
| May 23, 2022 | FSHD Society and Critical Path Institute Collaborate to Collect Clinical Trial Data | “This is a great example of how we can collaborate to help accelerate drug development for rare diseases.” - Alexandre Bétourné, Critical Path Institute RANDOLPH, Mass. (PRWEB) May 23, 2022 The FSHD Society, a research-focused patient advoc... |
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FAQ about FSHD Society
When was FSHD Society founded?
FSHD Society was founded in 1991.
What has the press written about FSHD Society?
Parsers VC has collected 16 articles mentioning FSHD Society, among them “New Research Portal Offers Access to Longitudinal FSHD Patient Data” (Jun 23, 2025) and “FSHD Society unites thousands to fight FSH Muscular Dystrophy with 7th annual Walk & Roll” (Sep 4, 2024).
Is FSHD Society still active?
Yes, FSHD Society is active; its latest activity on Parsers VC dates from Jun 17, 2026.