Newly Diagnosed with FSHD?

Newly diagnosed with FSHD? We are here to help!

Whether you have a new FSHD diagnosis, have been living with FSHD for some time, or are the parent of a child who was just diagnosed with FSHD, we understand that you may have a mix of emotions, including relief, anger, sadness, fear of the future, and even loneliness. Whatever your feelings, they are normal, and you are not alone. 

With the right support and resources, many people with FSHD can lead full and active lives.

Information at your fingertips

We have a number of informative publications that may help you on your journey. All of these and more can be found in our online Patient Library: 

Have specific questions or not sure where to start?

Have a question or just need someone who understands? Our FSHD Navigators can connect you with real people who’ve been where you are—whether you’re newly diagnosed, a parent of a child with early-onset FSHD, or simply looking for support. We’re here to walk alongside you and share trusted resources to help you live your best life with FSHD.   

For specific questions regarding your health or care, directly with your doctor or healthcare team 

Contact a Navigator

Track your health & find resources

Living with FSHD means facing different symptoms along the way, but you don’t have to navigate it without help. BetterLife FSHD is a health and research platform that gives you tools to track your symptoms and access to resources to better understand and manage your FSHD at no cost.  

With BetterLife, you can: 

  • Track your health – Record your symptoms and see changes over time. 
  • Get trusted information – Access resources created for people living with FSHD, tailored to what you’re experiencing. 
  • Connect with research – Learn about studies and find out if you may qualify to participate. 
  • Share data safely – Contribute to FSHD research while keeping your personal information private. 

By joining BetterLife, you’re not only gaining tools to better manage your own health—you’re also helping speed up research and move us closer to potential new treatments for FSHD. 

Find your people, find your support

Our community is filled with kind, caring people who understand what you’re facing—because they’ve been there too. Together, we share hope, strength, and support. No matter where you are on your journey, there’s a place for you here. We can’t wait to meet you! 

  • Local Chapters: Led by individuals living with FSHD, our local chapters create a strong support network in communities across North America. Find a chapter near you and start building connections today! 
  • The Gathering Place: We’ve partnered with incredible volunteer leaders from around the world to create groups tailored to meet you where you are on your FSHD journey. Each month, these groups meet online to share stories, stay active, exchange ideas, and offer support. 
  • Walk & Roll to Cure FSHD – This event is more than just a walk—it’s a movement! Find a Walk & Roll near you and be part of something bigger than FSHD! 

Stay informed and connected

Discover real stories that bring the FSHD experience to life, helping you make sense of your diagnosis, learn from others who’ve walked this path, see where research is headed, and feel supported every step of the way. 

  • FSHD Advocate magazine: Our community magazine delivers the latest research updates, personal stories, and practical resources to inform, inspire, and empower you. 
  • FSHD Society Community Blog: Explore real stories, helpful tips, and insights from others living with FSHD to guide you on your journey and help you become your own best advocate. 
  • FSHD Straight Talk Podcast: Join host Tim Hollenback as he talks with people who know FSHD firsthand, sharing authentic stories and experiences of living with this rare disease. 
  • Stay Connected Online – social media can be a lifeline! Join our online communities on Facebook, Instagram, and Twitter to find encouragement, share experiences, and connect with others who truly understand. 
  • Join Events Near You – Whether it’s a local gathering or a national conference, our event calendar is full of opportunities to connect, learn, and grow.

Join the Society

Sign up today and power the path forward.
Join the Community