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In case you missed it, the long-awaited and first-of-its-kind digital research and health platform, BetterLife FSHD, launched last fall. In our video below (scroll to the bottom of the page), […]
Author: Ashley Ferreira, FSHD Society The REACH Phase 3 clinical trial, conducted by Fulcrum Therapeutics, aimed to evaluate the efficacy of losmapimod in treating facioscapulohumeral muscular dystrophy (FSHD). Despite promising […]
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 […]
By Amy Bekier, San Diego, California Traveling is supposed to be magical. Think sunsets in Santorini, surprise upgrades, and tiny shampoos you definitely don’t need but absolutely take. But if […]
