Our look is new. Our purpose is the same. Learn more about our brand evolution.
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.
We are working to bring treatments to patients faster and ensure that no one faces FSHD alone. Explore our key initiatives.
We partner globally with researchers, industry leaders, and regulators to improve clinical trials, expand research infrastructure, and develop access to future treatments.
Our innovative health platform is helping people with FSHD track their symptoms while providing critical insights to researchers.
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.
From regional 360 conferences to local chapter meetings and online communities, we provide trusted resources and spaces for connection.
View our impact reports to learn more about how the FSHD Society is powering the path forward.
