Newly Formed Facioscapulohumeral Muscular Dystrophy Consortium Aims to Consolidate More than 13 Patient Registries in Effort to Accelerate Research on Rare Disease BOSTON – (February 22, 2017) – Today the… Read More »
Consensus Reached to Move Forward with Formation of International Global FSHD Patient Registry
Thank you, Spencer and Carden!
This week, Spencer Wyckoff competed on NBC’s “American Ninja Warrior” to raise awareness and funds for the FSH Society. Before taking the course, Spencer and his sister, Carden, described their family’s… Read More »
The Truth Hurts, but I Can Bear It
The following essay was written by Zabrisa, a 16 year old with FSHD who lives in Arizona. “Are you strong enough? Are you really sure you can do this, you’re… Read More »
FSH Society’s International Meeting to Bring Together Patients & Researchers From Around the World to Explore New Insights on Rare Disease
The FSH Society, the Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Biennial International Network Meeting. The meeting will… Read More »
FSH Society Announces Honorary Board Committed to Raising FSHD Awareness
The FSH Society, the Massachusetts-based non-profit organization that has transformed the science of the rare incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Honorary Board. The board of fourteen… Read More »