Join a worldwide alliance of patient advocacy organizations and individuals committed to raising awareness, accelerating therapies and improving lives for those affected by Facioscapulohumeral Muscular Dystrophy (FSHD).
Join a growing family of changemakers and help shape the future of FSHD care and research or discover the powerful work happening around the world and learn how you can be part of it.
Across continents and cultures, patient advocacy organizations come together with one shared goal: to bring hope, accelerate therapies, and uplift families affected by FSHD. Whether you’re a patient, a caregiver, a researcher, or an advocate, you belong here. Your voice matters, and your presence strengthens the movement.
World FSHD Day, June 20th, unites the global community to raise awareness, share stories, and support those affected by FSHD.
Meet the council working to unite global efforts to amplify education, advocacy, support, and coordinated messages and outreach efforts.
Project Mercury unites patient groups, experts, and biopharma to solve barriers and accelerate FSHD therapy development worldwide.
Receive invitations to quarterly skill share meetings where ideas are exchanged and progress is shared. You’ll also get occasional updates that keep you informed and inspired by the work happening around the world.