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No matter who you are, you are not alone on your FSHD journey. Connecting with the shared experience of other individuals who understand can provide invaluable support. The FSHD Society is committed to building and maintaining a strong community for individuals with FSHD, their families, and caregivers. You’ll find communities online, in person, and in specialized groups. Find your community and discover the power of connection.
Connect with other individuals in your area for support meetings, events, and local advocacy efforts. Our local chapters provide a welcoming and inclusive environment for individuals living with FSHD and their families to connect, share experiences, and build relationships.
Connect with the global FSHD community from the comfort of your own home. Our online forums and social media groups provide a safe and supportive space to share experiences, information, and resources. In our online communities, you can ask questions, get answers, and make meaningful connections with folks from around the world.
If you or your child has been diagnosed with FSHD, connecting with others who understand the unique challenges you are facing can be very helpful. The Parents’ Roundtable Chapter provides support and resources tailored to the specific needs and experiences of individuals and families in the early-onset community.
The World FSHD Alliance is a global network of FSHD organizations working together to advance research, raise awareness, and improve the lives of individuals with FSHD worldwide. If you’re outside the United States and Canada, you can find your nearest FSHD organization and get connected by visiting our World FSHD Alliance page.
The FSHD Society hosts a variety of events throughout the year, offering opportunities to connect with the FSHD community, learn about the latest research, and support our mission. From our signature Walk & Roll to Cure FSHD events to regional FSHD 360 conferences and online gatherings, there are many ways to connect and engage. Participating in our events is a great way to get involved, make a difference, and build lasting relationships within the FSHD community.
