What can we provide for people with FSHD and those who care for them.
We reach out to other countries in Europe. We try to enhance provision and support for those with FSHD
How do we liaise with people with FSHD and FSHD organisations across Europe and how do we spread information.
How do we work along with other national and international bodies relevant to FSHD
Join us on Facebook and get to know other members of the FSHD family.Connect here!
Connect with FSHD on a local level. Find others through your national communities.Find them here.
We've collected many different stories about FSHD in our book.Order the book here
Share stories and meet up during World FSHD-day. Read more here.
Read documentation on FSHD such as good practice guidelines.Available soon.
Read more about Clinical Trials Registries and how to register.Read more
We can help to set up the development of new patient organisation, within Europe or anywhere else.
If you need help or info on this subject, please contact: Diana.
We support research bids. Learn more about research and therapy here.
Help us do more research on FSHD. You can make a donation at:FSHD EuropeIBAN: NL33 RABO 0137 2747 34Bic: RABONL2U
We convince relevant organizations to do more and strengthen our resources.