About the FSHD Society

The FSHD Society is leading the global charge to find treatments and a cure for facioscapulohumeral muscular dystrophy (FSHD) while empowering individuals and families affected by the disease.

As the world’s largest research-focused FSHD patient organization, we connect patients, scientists, and advocates to accelerate progress and ensure that no one faces this disease alone.

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Our Vision

A world free from the suffering caused by FSHD.

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Our Mission

Find treatments and a cure for FSHD while empowering our families.

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Our Core Values

Research | Community | Urgency

Our Story

For more than 30 years, the FSHD Society has transformed the landscape for FSHD research and advocacy. What started as a grassroots effort has grown into a global movement, shaping scientific breakthroughs and bringing hope to families worldwide.

Explore Our History

Our Work

We focus on three key areas to drive change:

  • Accelerating research – Improving clinical trial readiness, uniting experts, and funding critical studies to advance treatments.
  • Connecting and supporting the community – Providing education, support, and resources to help individuals navigate life with FSHD.
  • Driving advocacy – Ensuring FSHD is recognized as a healthcare priority, influencing policies, and securing funding for research.
Learn More About Our Mission

Our Impact

Through treatment investments, patient advocacy, and community-driven initiatives, the FSHD Society has helped push FSHD from an underfunded, overlooked disease to an area of active drug development. Our work has contributed to:

  • Identifying the genetic cause of FSHD
  • Establishing clinical trial networks and research collaborations
  • Co-authoring federal policies that expand funding and research efforts
See the Impact We've Made

Join Us

Every breakthrough starts with people like you. Whether you want to advocate, learn, connect, or fundraise, there’s a way to get involved. Together, we are powering the path forward.

Join the Society