Walk and Roll to Cure FSHD
Be a part of our signature fundraising event across North America focused on raising funds to end FSHD.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
The FSHD Society relies on the energy and passion of our community to accelerate research, advocate for change, and provide vital support. There are many ways to get involved and make a real difference in the lives of individuals affected by FSHD.
You are not alone on your FSHD journey. The Society offers diverse opportunities to connect with others who understand. Find support, share experiences, learn, and build lasting relationships through our local chapters, online communities, and specialized groups. Together we are stronger.
The FSHD Society has chapters across North America, offering local in-person and virtual connections for support, resources, and community.
Join our online affinity groups and social media accounts to connect with FSHD community members around the world and learn.
Here you’ll find a dedicated community for individuals and families affected by the challenges of early onset FSHD.
Discover our global network of FSHD organizations working together to do more in education, support, and advocacy.
Join us for events that support FSHD research, raise awareness, and build community. Our events offer opportunities to connect, learn, and make a difference. From our signature Walk & Roll to Cure FSHD to 360 Conferences and World FSHD Day, there is something for everyone. Find an event that connects with you!
Be a part of our signature fundraising event across North America focused on raising funds to end FSHD.
We hold multiple 360 conferences across the US where you can learn about the latest research, condition management, and more.
Our bi-annual educational conference is the world’s largest networking event for FSHD patients and families.
Help us raise awareness of this global day of recognition for the FSHD community.
Your support, big or small, fuels our mission. Explore the many ways to give, from making a direct donation to starting your own fundraising campaign or volunteering your time. Every action brings us closer to treatments and a cure.
The generous support of time, talent, and treasure from patients, families, friends, donors, and sponsors make progress possible.
Volunteers nationwide raise funds their own way—from parties to golf days—to help cure FSHD. Join them and make a difference.
Your gift fuels research, empowers families, and expands care—every donation drives progress toward a cure for FSHD.
Volunteers are the backbone of the FSHD Society’s work. Share your time and skills to help us make a difference for the FSHD community.
Your voice can shape the future for the FSHD community. Join our advocacy efforts to influence government policies, support FDA initiatives, and ensure FSHD remains a priority. Share your story, connect with policymakers, and help us create a world where everyone with FSHD has the opportunity to thrive.
There is strength in numbers. Help us influence government policies that affect the FSHD community.
The Society is marshalling our resources and redoubling our efforts to ensure FSHD is a priority for the FDA.
A lack of institutional understanding can lead to non-empathetic decisions from payors. The Society can help.
Sharing your personal experience is a vital component of how we’re able to raise awareness and inspire action.