info@fshd-europe.info

Join Us

Who can become a member?

Ordinary members are legal entities that have registered for membership within their own country and represent FSHD patients within that country. These can be organisations supporting people with any kind of muscular dystrophy /neuro-muscular disease, or organisations specifically set up to represent/support people with FSHD. There can be no more than 2 members from each European country, one general neuromuscular organisation and one specifically for FSHD.

We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.

FSHD Europe has its registered office in the Netherlands.

The official language of the Association is English.

Interested? Contact us!

What are the benefits of membership?

FSHD Europe is the voice of FSHD patients across Europe and by joining you will become part of that bigger and louder voice. We work with clinicians and researchers, regulators, and pharmaceutical companies to facilitate and promote:

  1. Standardised approaches to diagnosis and treatment of FSHD across Europe, developing and reflecting current thinking and best practice
  2. Co-ordination of clinical trials for FSHD in Europe, to maximise opportunities for European patients
  3. Opportunities to learn how other patient organisations work and what has been successful for them
  4. Surveys and other activities to show what is important to patients
  5. Sharing of knowledge and experience
  6. Opportunities to participate in wider initiatives – currently Project Mercury

Membership Fees

The annual membership fee is €700 per year, payable by invoice after joining. For organisations who want to understand more about FSHD Europe before making the decision to join we can offer an introductory membership fee of €100 for one year. FSHD Europe’s financial year runs from January – December with invoices issued in April, so for organisations joining part way through the year a proportional membership fee will be payable.

How does my organisation become a member, or learn more about what membership entails?

There are various options below so please contact ria@fshd-europe.info saying what you are interested in or when you have any questions about becoming a member.

The FSHD European Trial Network (ETN) is part of FSHD Europe and therefore we work closely with researchers and clinicians: further information available here.

 

  Membership category Fee payable
1. If you are an eligible registered organisation in your own country and want to join FSHD Europe €700
2. If you’d like to participate in FSHD Europe for up to a year before deciding to join (initial discussion is free) €100
3. If you are a patient network that is not yet a registered organisation you can join our developing members group Nothing
4. If you are a clinician or researcher in FSHD in Europe who would like to join the FSHD European Trial Network (see section on this website) Nothing

We will contact you to arrange a meeting to discuss next steps.