Our look is new. Our purpose is the same. Learn more about our brand evolution.
The FSHD Society is the world’s largest advocacy and research organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.
Empowering change through research, support, and relentless advocacy for FSHD families.
Advancing hope through groundbreaking FSHD research and innovative clinical trials worldwide.
Take control of your FSHD journey and help develop potential treatments faster.
Ask the FSHD Navigators and get connected with a real person. We are here to journey alongside you and give you the resources you need to live your best life with FSHD.
Just email us at Navigator@FSHDsociety.org, call (781) 301-6060, or submit a question.
by Erin Saxon, FSHD Society A few months ago, I began an exciting project: capturing the stories of the early members of the FSHD Society. Since then, I’ve interviewed several […]
Connecting our community through the latest FSHD information on research, newsmakers, and breakthroughs.
Accelerating scientific discoveries and clinical advancements to develop treatments and a cure for FSHD.
Join us for engaging events that foster community, raise awareness, and support FSHD families and initiatives.
Accelerating research, providing support, envisioning a world without FSHD.
Our network supports the FSHD community with compassion and collaboration.
The Society has bold goals and we are making significant progress.
