Our objective is to be the voice and
the ears of people with FSHD
throughout Europe.

See me, hear me
and listen.

We work to raise awareness, understanding and
knowledge of FSHD. We reach out to people with FSHD,
clinicians, scientists, and many more.

We stand together:
patients & scientists
united

We aim to provide an FSHD knowledge platform
sharing information and best practices.

We share knowledge
and best practices

Help us to foster a culture of collaboration
amongst the different people living and working
with FSHD.

Join us in
our fight