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Dan Perez’s fierce advocacy will advance knowledge and extend the lives of people with FSHD Breathing complications in FSHD can be deadly, but with the lion’s share of research focused… Read More »
Putting breathing issues on the front burner
A long journey but worth it
Face-to-face meetings add an extra layer of feelings and motivation by Ricardo Gerpe, FSHD Spain I had decided to go to Orlando for the FSHD Connect conference although due to… Read More »
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 »
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 »