FSHD Europe: The European voice of people with FSHD


FSHD Europe's ultimate goal is to improve the quality of life for people living with the muscle wasting disease FSHD.

FSHD affects the way you smile, the way you sleep, the way you get dressed in the morning, the way you work and the way people perceive and treat you. Many people with FSHD cannot smile, hold a baby in their arms, climb stairs or even walk. Living with FSHD requires adapting to these ever increasing physical limitations.

Unfortunately, no treatment for FSHD has yet been found. That is why research is so important.



Our fiscal number in The Netherlands is 8505 92 999

Latest News

  • 29 AUGUST 2013: In an interview by (FSHD Europe member) UILDM our chairwoman Fabiola Bertinotti talks about the central and active role FSHD Europe is taking in the dialogue with researchers, clinicians and the pharmaceutical companies. Read more
  • 22 APRIL 2013: New animal model for FSHD. An international team of researchers, co-financed by FSHD Europe member the Dutch FSHD Foundation, has developed a mouse model with the genetic defect for FSHD. " We hope that in the near future these mouse models will serve an important purpose in drug development programs for FSHD," said co-author Prof. Silvère van der Maarel of the Leiden University Medical Center in a press release of the FSH Society. Read more
  • Book 'You're not alone with FSHD!' for sale!
  • Book 'You're not alone with FSHD!'