History: Our association was born in 2010 thanks to the initiative of patients and close relatives of people with Facioscapulohumeral Muscular Dystrophy (FSHD). Kees Van der Graaf of the Netherlands was the first to have the idea of creating a federation. With the support of Ria Broekgaarden, highly experienced in associations of neuromuscular diseases, Van der Graaf began working with Fabiola Maria Bertinotti of Italy, Manuel Cabral of France and Stuart Watt of the UK. Within a few months, this enthusiastic group of patients’ relatives founded FSHD Europe.
From its inception, each Board member of the organisation has represented their local association or patient group and looked after the interests of their respective organisation in relation to the various international stakeholders. Currently seven different associations or work groups: Amis FSH and AFM Télethon (France), FSHD-Diagnosegruppe in der DGM e. V. (Germany), FSHD Spain (Spain), FSHD Italia (Italy), Spierziekten Nederland (The Netherlands) and FSH-MD Support Group UK (United Kingdom) are represented in FSHD Europe and the organisation is continuing to expand.
Diana v.d. Meij-Kim (Spierziekten Nederland)
Sheila Hawkins (MDUK)
Bine Haase (FSHD diagnosis group within the DGM e. V.)
María Muñoz Bravo (FSHD Spain)
Annalisa Alimandi, Paola de Donato (FSHD Italia)
Hicham Alaoui (Ami FSH)
Marie-Martine Fleck (AFM Téléthon)