Our goal

Given the "rare" occurrence of FSHD, there is unfortunately little interest from (pharmaceutical) industries to invest substantially and on a continuous basis in FSHD Research.

Kees and Renée van der Graaf, parents of a son that suffers from FSHD, took the initiative to set up the Dutch FSHD Foundation in 1997, as they believed that a private initiative aimed at fundraising combined with targeted, high quality worldwide research can increase the chances of finding the cause and developing a cure for FSHD.

The FSHD Foundation stimulates, facilitates, and financially supports solid scientific research into the causes of FSHD, in order to find treatments and develop solutions that help improve patients’ quality of life.