[…] 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 […]
Extraordinary Measures – Understanding the socioeconomic impact of FSHD
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 […]
Bowel and urinary issues in FSHD
We know that patients are the experts when it comes to understanding the impacts of FSHD on their health and well-being. That’s why when we saw many discussions on social […]