Our look is new. Our purpose is the same. Learn more about our brand evolution.
By Selina Lai, Pacific Northwest Chapter Director  Our attendance at the Denver Patient Connect Conference last June inspired us to plan a summer trip to Europe to participate in the […]
By Ria de Haas, FSHD Europe FSHD Europe proudly hosted the first edition of FSHD Connect Europe, an event that marked a significant milestone for the European FSHD community. The […]
By Jenny Gast, Director of Chapter Programs As the FSHD Society continues to grow, we’re reimagining how we connect our community across chapters. On June 25, we piloted a new […]
On June 24, 2025, Avidity Biosciences, alongside Dr. Nicholas Johnson, presented the much‑anticipated topline results from the FORTITUDE Phase 1/2 study of del‑brax (also known as delpacibart braxlosiran), during an FSHD University […]
By June Kinoshita, FSHD Society The 2025 International Research Congress (IRC) on Facioscapulohumeral Muscular Dystrophy (FSHD) convened June 12-13 in Amsterdam and online, gathering the world’s leading scientists, clinicians, and […]
