Our association was born in 2010 thanks to the initiative of patients and close relatives of people with FSHD (Facioscapulohumeral Muscular Dystrophy). 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 member of the organization has represented their local association or patient group and taken care of the interests of their respective organisation in relation to the various international stakeholders. Currently seven different associations or work g roups -Ami s FSH (Fr ance ), DGM Diagnosegruppe (Germany), Somos FSHD Espana (Spain), Stichting FSHD and VSN (The Netherlands), UILDM (Italia), UK FSHD Support Group (United Kingdom) and Morocco - are represented in FSHD Europe and is continuing to expand.