FSHD Connect Conference

Empowering You through Connection and Education

The FSHD Society’s Connect Conference is the world’s largest gathering for individuals and families affected by Facioscapulohumeral muscular dystrophy (FSHD). Held every two years, the FSHD Connect Conference brings together hundreds of individuals and families living with FSHD, clinicians, and researchers for two days of immersive learning and workshops.

What You’ll Learn

At FSHD Connect, you’ll get the latest updates on:

• FSHD Research – Hear directly from scientists working on treatments and potential cures
• Managing Daily Life – Learn practical tips for improving mobility, staying active, and taking care of your overall health
• Living Well with FSHD – Discover resources and strategies for work, family life, and emotional well-being

Meet the Experts & Community

This conference is a one-of-a-kind opportunity to hear from top researchers, medical professionals, and volunteer leaders who are leading the fight against FSHD. Their presentations help make FSHD Connect the most trusted educational event for our community.

Why You Should Attend

• Be Empowered – Get knowledge and tools to take charge of your health.
• Build Connections – Meet others who understand what you’re going through.
• Stay Informed – Learn about the latest medical advancements and care strategies.

Whether you attend in person or join us virtually, FSHD Connect is your chance power the path forward in FSHD.