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

The Americas

• 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

Europe & UK

• 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: Registry for Italian patients (hosted by FSHD Society)
• Italy: UILDM (Unione Italiana Lotta alla Distrofia Muscolare)
• Italy: FSHD Italia
• Netherlands: Spierziekten Nederland : Facioscapulohumerale spierdystrofie
• Netherlands: FSHD Stichting
• Nordic countries: FSHD Nordic
• Slovakia: FSHD Slovakia
• Slovenia: MDA of Slovenia - FSHD Committee
• Spain: FSHD Spain
• UK: FSHD UK and FSHD-MD Support Group UK (affiliated with MD UK)

Africa, Asia, Middle East & Oceania

• Australia: FSHD Global Research Foundation
• China: FSHD China
• Hong Kong: FSHD Hong Kong
• India: FSHD India
• Israel: FSHD Israel
• Japan: FSHD Japan
• Japan:Japan Muscular Dystrophy Association
• New Zealand: FSHD New Zealand Facebook group
• Palestine: FSHD Palestine Facebook Group
• South Africa: Muscular Dystrophy Foundation of South Africa
• Turkey: FSHD Turkey