Our Objectives

We are there

What can we provide for people with FSHD and those who care for them?

We reach out

How do we reach out to other countries in Europe?
How do we try to enhance provision and support for those with FSHD?

We share

How do we liaise with people with FSHD and FSHD organisations across Europe and how do we share information?

We work

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 locally

Connect with FSHD on a local level. Find others through your national communities.
Find them here.

Buy our book

We've collected many different stories about FSHD in our book.
Order the book here

World FSHD-day

Share stories and meet up during World FSHD-day. Read more here.

Good practices

Read documentation on FSHD such as good practice guidelines.
Read more here:

Clinical trials

Read more about Clinical Trials Registries and how to register.
Read more

Set up a new patient organisation?

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.

From Passive To Active!

We actively encourage the patient role in shared decision making. Read about it in our report on the ENMC Summit. Read more...

Research bids

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 Europe
IBAN: NL33 RABO 0137 2747 34


We persuade relevant organisations to provide more support and resources for FSHD.