Telemedicine for FSHD is an idea whose time has come! If people with FSHD are rare, doctors who understand FSHD are rarer still. Patients who don’t have the time or […]
Telemedicine for FSHD
Extraordinary Measures – Understanding the socioeconomic impact of FSHD
[…] a lifetime. However, this type of approach fails to include many of the other costs FSHD patients incur during their journey. These “hidden costs” include all out-of-pocket expenses (e.g. genetic […]
Roche announces Phase 2 trial in FSHD
[…] that it is launching an international Phase 2 clinical trial for facioscapulohumeral muscular dystrophy ( FSHD). The trial, which is called MANOEUVRE, will take place in Denmark, Italy, the UK, […]
Teaching future doctors about FSHD
[…] (foreground) in the auditorium with medical students in the background. I was formally diagnosed with FSHD in January 2019. At that time I knew I was in trouble, because I […]
About early-onset FSHD
Our webinar with Dr. Tina Duong remains timely and important for families with FSHD. In it, she focuses on individuals with early-onset FSHD, meaning those who develop symptoms in their […]