In early June 2025, Avidity shared promising results from their Phase 2 clinical trial. Participants who received the treatment showed noticeable improvements in strength and function compared to those on […]
An announcement from Avidity Biosciences to the FSHD community: June 9, 2025 Dear FSHD Community, Today, we are very pleased to share multiple milestones related to the delpacibart braxlosiran (del-brax) […]
Author: Dr. Raymond A. Huml Rare diseases affect millions worldwide, yet treatment options remain scarce. For families like ours who live with Facioscapulohumeral muscular dystrophy (FSHD) – the journey toward […]
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 was a […]
by Erin Saxon, FSHD Society A few months ago, I began an exciting project: capturing the stories of the early members of the FSHD Society. Since then, I’ve interviewed several […]
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