The purpose of World FSHD Alliance is to connect and activate the FSHD community globally in order to build a worldwide community of activists, empower patients, and advance our shared mission of accelerating the development of therapies.
This website is hosted by the FSHD Society on behalf of the World FSHD Alliance.
This global alliance was established because together, by sharing resources, strategy, and “speaking in one voice,” we can accomplish much more in education, support, and advocacy. Just as importantly, FSHD clinical trials will be international in scope. Coordinating our messages and outreach efforts will result in more timely, cost-effective ways to engage with industry around drug development, clinical trials, regulatory approval, and patients’ access to therapies.
World FSHD Alliance Members
- Argentina: FSHD Argentina
- Bolivia: FSHD Bolivia
- Brazil: ABRAFEU (Associação Brasileira Distrofia Muscular Facio-Escaulo-Umeral)
- Canada: Muscular Dystrophy Canada
- Chile: Distrofia Muscular FSH en Chile
- USA/International: FSHD Society
- EU: FSHD Europe
- France: AFM Téléthon FSHD support group
- France: Amis FSH
- Germany: FSHD Diagnosis Group within the DGM
- Greece: FSHD Greece Facebook group
- Italy: UILDM (Unione Italiana Lotta alla Distrofia Muscolare)
- Italy: FSHD Italia
- Netherlands: Spierziekten Nederland : Facioscapulohumerale spierdystrofie
- Netherlands: FSHD Stichting
- Russia: FSHD Russia
- Spain: FSHD Spain
- UK: FSHD-MD Support Group UK (affiliated with MD UK)
Africa, Asia, Middle East & Oceania