https://www.youtube.com/watch?v=noGX27Vz2eQ Jane Nemke shares how she applied universal design principles to renovate her condominium so that it was easier for her to live in as her FSHD symptoms progressed. Her… Read More »
Design to thrive
We are convening the world this month in Orlando, Florida
Global stakeholders are meeting at FSHD Society conferences The FSHD Society is holding back-to-back meetings this month in Orlando, Florida, to convene patients, families, researchers, clinicians, advocacy leaders, industry scientists,… Read More »
June 20 is World FSHD Day 2022
A global celebration to raise awareness of FSH muscular dystrophy Are you tired of getting blank stares when you explain that you or a loved one have facioscapulohumeral muscular dystrophy?… Read More »
About ankle-foot orthoses (AFOs)
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 »
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 »