FSHD Europe is an association with FSHD and muscular disease organisations from various European countries as members. Organizations in Italy, France and the Netherlands have been involved since the outset and other European organizations are being invited to join. 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 organizations, and governments to achieve our objectives.
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 (Spierziekten Nederland). FSHD Europe is registered in Baarn (The Netherlands), at the headquarters of the Dutch Neuromuscular Diseases Association (Spierziekten Nederland).
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.
- to raise awareness, understanding and knowledge of FSHD.
- to encourage, promote and share best practices in the care, welfare, support and diagnosis for FSHD affected individuals and their families.
- to stimulate, encourage and support more research into finding a cure for FSHD.
- to source and raise funds for FSHD research and appropriate care and support programs.
- to allocate and manage funds for more FSHD research, more FSHD researchers and appropriate care and support programs.
- to work with other national and international FSHD and dystrophy organisations, and governments to achieve the objectives of FSHD Europe.
At present FSHD Europe has no funding activities of its own.