前列腺增生症连接会议

The Future in Motion: Empowerment, Connection, and Care for Life with FSHD

Uniting patients, families, and experts to equip, connect and prepare for what lies ahead.

Thank you for joining us in Rosemont, IL (the Greater Chicago area) for the 2026 FSHD Connect Conference—our biennial global gathering dedicated to education, connection, and empowerment for the FSHD community.

View this year’s final program book 这里 and this year’s speaker booklet 这里.

Each year, individuals and families from around the world come together at Connect to build meaningful relationships, find support along every stage of the FSHD journey, and gain the latest updates in research, care, and advocacy. This hybrid event unites the community with leading clinicians, researchers, and advocates to share knowledge, spark hope, and power the path forward—together.

FSHD Connect Conference is designed to leave you feeling informed, supported, and energized by the strength of our global community.

2026 Keynote Speaker: Dr. Ray Huml

We are honored to welcome Dr. Ray Huml as the keynote speaker for the 2026 FSHD Connect Conference. A healthcare executive, researcher, and rare disease advocate—as well as a parent of children living with FSHD—Dr. Huml brings a rare blend of professional expertise and personal commitment to the FSHD community.

Aligning with this year’s theme, The Future in Motion: Empowerment, Connection, and Care for Life with FSHD, Dr. Huml will explore how our community can stay equipped, connected, and prepared for what lies ahead. His keynote will highlight the power of collaboration across patients, families, clinicians, researchers, industry, and advocates, and how these partnerships can strengthen lifelong care and accelerate progress in FSHD.

2026 Sponsors

Thank you to our generous sponsors of the 2026 Connect Conference:

Presenting Sponsors

Avidity Biosciences and Novartis logos

Platinum Sponsors

Event Sponsors

Scholarship Sponsor

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.