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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.
FSHD is a complex condition, but knowledge is power. Explore our resources to learn about every stage and manifestation of FSHD.
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.
FSHD can impact both adults and children. Early-onset FSHD refers to children between five and ten years old who have begun to show symptoms and often progress more rapidly.
Genetic testing is an important part of the FSHD journey and plays a vital role in research, leading to therapies and eventually a cure. Find out if it’s right for you.
Early FSHD symptoms are often overlooked or misdiagnosed. Even many physicians don’t recognize the symptoms. Find out more about what FSHD symptoms look like.
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.
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.
Helping you take control of your FSHD journey and helping develop potential treatments faster.
Putting together a team of FSHD-experienced healthcare providers is essential. We can help connect you.
Our FSHD Navigators offer personalized guidance and resources you need to live your best life with FSHD.
FSHD has many healthcare symptoms. Learn about how you can manage these symptoms and some of the medical concerns you should be aware of.
Whether you’re newly diagnosed or have been living with FSHD for years, we have resources tailored to your needs.
An FSHD diagnosis, for you or a loved one, comes with emotions and questions. The Society is here to help.
Discover and access the latest tools and equipment available to assist you throughout your journey with FSHD.
The Society helps healthcare providers connect and collaborate on care for individuals living with FSHD.
Advancements in genome research make it possible for couples to be mindful about family planning.
The Society can help provide financial and legal resources to individuals and families living with FSHD.
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.
Connect with resources and support in your community.
The FSHD Society is an active online community on popular platforms.
Find wraparound support that helps you today and future patients tomorrow.
