FSHD Connect Conference

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.

June 26–28, 2026
Hyatt Regency O’Hare Chicago

Join 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. In addition to presentations on Saturday and Sunday, Connect includes

6:00-8:00pm on Friday, June 26: a joint reception with International Research Congress participants
7:00-9:00pm on Saturday, June 27: award ceremony and banquet

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.

Held just minutes from downtown Chicago, Rosemont offers the perfect mix of convenience and fun. Attendees can enjoy world-class dining, iconic architecture, lakefront views, museums, live music, and shopping, all while reconnecting with the FSHD community between sessions. Whether you join us in person or virtually, the 2026 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.

Registration & Scholarship Information

Registration is now live for Connect 2026. In-person registration will remain open until May 25, 2026

New for 2026: Connect Companions

Connect Companions is a new opt-in program designed to help attendees feel welcomed, supported, and part of the community before the FSHD Connect Conference even begins. By pairing consenting participants ahead of the event, the program offers a friendly point of connection, eases the experience for first-time attendees, and ensures no one navigates Connect alone. For more information or to join the program, fill out the Connect Companion Request Form below.

2026 Scholarship Application

The FSHD Society is pleased to offer a limited number of scholarships to help reduce financial barriers to participation in the 2026 FSHD Connect Conference. Scholarships are intended to support individuals and families impacted by FSHD who would benefit from attending but may face cost-related challenges. Anyone in the FSHD community is welcome to apply, including patients, caregivers, and family members. Preference may be given to first-time attendees and those who self-report a financial need or barrier. More information can be found on the application form.

Apply for a Scholarship

Sponsorship Information

Interested in being a 2026 Connect sponsor? Look through our sponsorship packet for more information.

2026 Connect Sponsorship Packet

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.