To coincide with World Rare Disease Day FSHD Patients across Europe say what they want from clinical trials Announcement by FSHD Europe FSHD Europe is pleased to publish the Lay… Read More »
European FSHD patients speak out
Find your rope team
When the going gets tough, your team will hold you up by Leigh Reynolds, FSHD Society Army Command Sgt. Maj. Gretchen Evans earned the highest rank an enlisted soldier can… Read More »
Avidity gets orphan drug designation
Avidity Biosciences announced this week that it had received FDA Orphan Drug Designation for its experimental FSHD treatment, called AOC 1020. This does NOT mean the drug is now available… Read More »
Stay warm and safe
Our monthly Wellness Hour invited Dr. Mark Tarnopolsky of McMaster University to discuss an issue that many with FSHD face in winter: feeling especially susceptible to cold temperatures. He explains… Read More »
Feeling Fit: Exercises for the neck and shoulders
Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. If anything hurts, stop! In the November… Read More »