The Board of FSHD Europe consists of the following members:
- Kees van der Graaf (chairman)
- Fabiola Bertinotti (vice-chairwoman)
- Manuel Cabral (secretary)
- Frank van Zimmeren (treasurer and also member of the Scientific Advisory Board)
- Liz van Zimmeren (chairwoman of the Family Interest Group)
- Theo Verrips (chairman of the Scientific Advisory Board)
- Naima Librahimi