The FSH Society has awarded a grant for a second year of support for the FSHD Clinical Trials Research Network (CTRN), through the coordinating center based at the University of… Read More »
$133,254 awarded to FSHD Clinical Trials Research Network
Rare Disease Day Rare Talent Challenge
This year, to celebrate Rare Disease Day, taking place on Wednesday, February 28, we will be hosting a viral photo and video challenge! Share your rare talents and help us… Read More »
FSH Society awards $690,894 in new research grants
A drug that helps muscles grow and regenerate. Molecules that occur naturally in our cells to repress DUX4, the “toxic gene” thought to cause FSHD. A deeper dive into why… Read More »
Win a day of self-care with Hollywood star Debby Ryan!
We’re excited to announce that YOU could join Debby Ryan for a self-care day in Los Angeles! Flights and hotel are included, plus donations to win benefit our work here… Read More »
2018 FSHD Connect Conference registration is now open!
Our community’s premier networking event for immersive learning and community building Our biennial FSHD Connect Conference is an amazing opportunity to meet hundreds of patients and families, as our leading… Read More »