Letter to the FSHD Community from Sarepta
26 March 2026 We welcome the announcement from Sarepta Therapeutics on early clinical data from its siRNA program targeting FSHD.
March 26, 2026
News & Media
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Stay connected with the latest developments in FSHD research and community progress. This is your trusted hub for updates on scientific breakthroughs, inspiring personal stories, and the work we’re doing globally to accelerate treatments and a cure for Facioscapulohumeral Muscular Dystrophy (FSHD).
By staying informed and engaged, you’re helping us raise awareness, support individuals and families impacted by FSHD, and drive real momentum toward lasting solutions.
Letter to the FSHD Community from Roche
19 March 2026 Overnight, Roche has shared with the FSHD community that it will discontinue its Phase II MANOEUVRE trial
March 20, 2026
FSHD Global Partners with Leading Paediatric Institutions to Advance Research for Children
August 2025 FSHD Global Research Foundation recently visited the Murdoch Children’s Research Institute (MCRI) and The Royal Children’s Hospital to
September 26, 2025
Sydney FSHD Community Meeting: A Night of Innovation and Unity
On September 15th, the Sydney FSHD community gathered for an unforgettable evening of connection and discovery. Generously hosted by UBS,
September 22, 2025
World-first disease progression model offers new hope for muscular dystrophy patients
Patients with a common type of muscular dystrophy a world-first AI powered disease progression model with ‘life-changing’ implications, using advanced
September 13, 2025
Wheelchair Boccia: A sport for everyone
By Mitch Albert Boccia is a dynamic and inclusive Paralympic sport designed specifically for people with physical disabilities. It offers
August 29, 2025
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