Ζώντας με FSHD

Living with facioscapulohumeral muscular dystrophy (FSHD) comes with different challenges, but you don’t need to travel on this journey alone. The FSHD Society is committed to offering individuals and caregivers living with FSHD comprehensive resources for navigating life with FSHD no matter where they are on their journey. The FSHD Society is here to provide you with the tools and information you need to live your best life.

Κατανόηση της FSHD

FSHD is a complex condition, but knowledge is power. Explore our resources to learn about every stage and manifestation of FSHD.

Διάγνωση

Getting a formal FSHD diagnosis is important for you to receive the care that you need. Do you think you or a family member might have FSHD? Having trouble understanding where to start? Look through our resources to understand how to get an FSHD diagnosis.

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Πανεπιστήμιο FSHD

Knowledge is power! We want you to have all the tools you need to navigate your journey. Check out our webinars and other educational resources to help you navigate your journey.

Learn From Experts

Διαχείριση της FSHD

Living with FSHD presents unique challenges, but you’re not alone. We’re here to support you with tools and resources that make a difference.

  • BetterLife FSHD

    Helping you take control of your FSHD journey and helping develop potential treatments faster.

  • Εύρεση φροντίδας

    Putting together a team of FSHD-experienced healthcare providers is essential. We can help connect you.

  • FSHD Navigator

    Our FSHD Navigators offer personalized guidance and resources you need to live your best life with FSHD.

  • Symptom Management

    FSHD has many healthcare symptoms. Learn about how you can manage these symptoms and some of the medical concerns you should be aware of.

Resources for Every Stage

Whether you’re newly diagnosed or have been living with FSHD for years, we have resources tailored to your needs.

Join the Community

You’re not just living with FSHD. You are a part of a strong, supportive community. Connect with others in the FSHD community who understand your journey.