While no one wishes for a diagnosis of FSHD, now that you are here, you are about to join an awesome community. We are re-writing the future by taking charge of research to improve medical management and find treatments and a cure. We are living full lives, contributing in extraordinary ways to society.
Check out FSHD University, our resource with articles and videos about medical care, fitness and exercise, research, and mental health. Another invaluable resource is our blog. It is full of articles to help you stay up to date on the latest research; provide helpful information on living with FSHD; keep you informed on local, regional and national events; and let you know more about how you can be involved.
If you would like to receive all of our news including e-alerts about clinical studies and trials, please join our Contact Registry.
If you just want news but not clinical trial alerts, simply sign up here.
FSH muscular dystrophy is rare, affecting around 1 in 8,000 people, so your doctor and other healthcare providers are unlikely to know much about it. You will need to take charge by educating yourself and finding healthcare providers who are open to learning from you and from experts that we can refer them to.
If you are able to make an appointment at one of the FSHD Clinical Trial Research Network (CTRN) sites, we highly recommend it. Many people make a point of having their annual check-up at a CTRN clinic. You will be seen by a team that has expertise with FSHD, and these clinics are also involved with research and drug trials. It is empowering to meet the researchers who have dedicated themselves to finding treatments for FSHD and to know that you can be part of the solution.
Questions? Contact us!
We provide guidance on how to talk about your diagnosis with your healthcare providers, your family, friends, coworkers, and the world at large.
A lot, as it turns out. Visit this page to learn about research on treatments and your essential role in moving things forward faster.
There’s comfort and power in numbers. Individuals and families in your local area can be an invaluable resource. We’ll connect you.