Did you know we have an active group of international FSHD advocacy leaders, the World FSHD Alliance? We meet every three months to discuss global strategies. The members bring… Read More »
About ankle-foot orthoses (AFOs)
Collaborating to collect clinical trial data
FSHD Society and Critical Path Institute will aggregate data in C-Path’s Rare Diseases Cures Accelerator-Data and Analytics Platform The FSHD Society announced that it has partnered with Critical Path Institute… Read More »
On a Mission to Cure FSHD
Great.com interviews FSHD Socıety about Curing FSHD While Empowering Affected Families Danielle Riberio from Great.com interviewed Mark Stone, CEO of FSHD Society, as part of their ‘Great.com Talks With…’ podcast…. Read More »
A delicate matter for female travelers with FSHD
Tips and tricks for managing urinary incontinence Editor’s note: This is a summary of the May Women on Wellness Zoom meeting. The members met to discuss their concerns and solutions… Read More »
Pain management in FSHD
The science and psychology of managing chronic pain Chronic pain is one of the more difficult aspects of living with FSHD, and also one of the most challenging to… Read More »