FSHD-Europe: European Voice of People with FSHD

FSHD Europe was set up after the research breakthrough in August 2010 at the initiation of Kees van der Graaf, director FSHD Foundation (Stichting FSHD) and Ria Broekgaarden, staff member of the Dutch Neuromuscular Diseases Association (VSN).

The ultimate goal of FSHD Europe is to improve the quality of life for people living with FSHD. We work with national and international FSHD and muscle disease organisations, and governments to achieve our objectives.

FSHD Europe is an association with FSHD and muscular disease organisations from various European countries as members. Organisations in Italy, France and the Netherlands have been involved since the outset and other European organisations are being invited to join.

FSHD Europe has an executive board composed of representatives from the participating countries.  The Family Interest Group (FIG) within FSHD Europe is formed by patients and family members of patients. Its Scientific Advisory Board (SAB) makes recommendations on research to the executive board.

FSHD Europe is registered in Baarn (The Netherlands), at the headquarters of the Dutch Neuromuscular Diseases Association (VSN).