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The FSHD community received encouraging news today as Novartis announced that delpacibart braxlosiran (del-brax) met the primary and key secondary endpoints in the biomarker cohort of the Phase 1/2 FORTITUDE […]
by Kayleigh Worek, BetterLife FSHD Manager What BetterLife FSHD data is telling us this Mental Health Awareness Month Living with FSHD can impact more than just muscles. When asking people […]
by Amanda Hill, Research & Care Programs Officer at the FSHD Society, and Ally Roets, Parent, Caregiver, CureFSHD for All Advocate and Parents’ Roundtable Leader Many of us in […]
The FSHD Industry Collaborative is a first-of-its-kind, multi-stakeholder initiative designed to improve how FSHD clinical trials are designed, executed, and evaluated RANDOLPH, Mass. and VANCOUVER, BC, April 8, 2026 /PRNewswire/ […]
On March 25, 2026, Sarepta shared the following letter to the FSHD Community: Dear Members of the FSHD Community, We are reaching out today for the first time to briefly […]
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