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Powering The Path Forward

Who We Are

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.

BetterLife FSHD

Take control of your FSHD journey and help develop potential treatments faster.

BetterLife FSHD
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Have a question, but not sure who to ask?

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.

FSHD News & Events

Events

Join us for engaging events that foster community, raise awareness, and support FSHD families and initiatives.