Meet the World FSHD Alliance Leaders Fabio Figueiredo Abrafeu – Brazilian Association for Facioscapulohumeral Dystrophy Eduardo Silveira Abrafeu – Brazilian Association for Facioscapulohumeral Dystrophy Sylvie Genet AFM-Téléthon France FSHD […]
World Alliance Leaders
A new tool for measuring disease burden in FSH muscular dystrophy
by Amanda Hill, Denver, Colorado FSHD clinical researchers recently published what may soon become a standard battery of assessments for use in clinical trials, an exciting and essential milestone for […]
Newly Diagnosed?
[…] Are Here to Help! Whether you have a new diagnosis of facioscapulohumeral muscular dystrophy ( FSHD) or have been living with FSHD for some time, we understand that you may […]
Advocating for Change on Capitol Hill
A Day of Impact in Washington, D.C. On May 8th, the FSHD Society held its first-ever Day on Capitol Hill in Washington, D.C. This milestone in our advocacy efforts brought […]
Interview with Daniel Perez
[…] Congressional committees to seek funding for research into the deadly genetic muscle disease. Living with FSHD himself, Perez knows firsthand how dire the mission is to find a cure. And […]