Fulcrum and the FSHD Society Reflect on Partnership at Advocacy Event On February 28th, Fulcrum Therapeutics hosted a Rare Disease Day Advocacy Event at their headquarters in Cambridge, MA. This… Read More »
Honoring Rare Disease Day: The Power of Collaboration
Every person’s effort takes us closer to the tipping point
Stories from our 2024 Volunteer Leadership Summit In early February, 75 of our Volunteer Leaders from across the US and Canada met in-person at the Chicago Airport Hilton or virtually… Read More »
From the Wayback Machine, 2010
Who hasn’t worried that when they clean out the attic, they’ll inadvertently send a precious heirloom to the trash heap? Sometimes a good Samaritan finds the treasure and returns it…. Read More »
Clinical care vs. clinical research
Know the difference by Amanda Hill, FSHD Society In your journey with FSHD, you’ve probably heard about the importance of seeing your doctor regularly. You also most likely have heard… Read More »
Treatments for FSHD: A broader view
There are already many effective interventions by Nicol Voermans, MD PhD, Radboud University Medical Center We hear that currently there is “no cure for FSHD,” but this does not mean… Read More »