Il nostro impatto

The FSHD Society is the world’s largest patient advocacy and research organization focused on facioscapulohumeral muscular dystrophy (FSHD). Our work is aimed at speeding the development of treatments and improving quality of life for all individuals and families affected by FSHD. We are dedicated to removing barriers to treatment, advancing research through collaboration, and providing trusted information and support.

Learn more about the difference we’re making

We are working to bring treatments to patients faster and ensure that no one faces FSHD alone. Explore our key initiatives.

Advocacy & Policy

We are a leading voice for the FSHD community, working with government agencies, insurers, and policymakers to improve care, secure research funding, and ensure access to treatments.

Per saperne di più

View our impact reports to learn more about how the FSHD Society is powering the path forward.