What can we provide for people with FSHD and those who care for them?
How do we reach out to other countries in Europe?How do 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 share 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.Read more here:
Read more about Clinical Trials Registries and how to register.Read more
We can help you to set up the development of a new patient organisation, within Europe elsewhere.
If you need help or info on this subject, please contact: Diana.
We actively encourage the patient role in shared decision making. Read about it in our report on the ENMC Summit. Read more...
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 persuade relevant organisations to provide more support and resources for FSHD.