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 […]
World FSHD Day, a global movement to raise awareness of FSHD, occurs on June 20. From orange slice selfies and proclamations to lit up buildings, World FSHD Day brings together […]
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 […]
College is possible. Preparation is necessary. by Wade C., FSHD Navigator Let’s start here: college is possible for students with FSHD. Yes, there might be some careers that aren’t realistic […]
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