Late 2019 a major event happened in the domain of rare diseases: most of the European patient association involved in or dedicated to myotonic dystrophies decided to join their effort and federate in the first European patient association fully committed to Myotonic Dystrophies, called Euro-DyMA, representing roughly 100000 patients all across Europe.

Euro-DyMA is a non-profit association dedicated to share knowledge and stimulate commitment of European health professionals and scientists about myotonic dystrophies. At the current time, 10 associations are members of the federation in France, Belgium, Germany, Netherlands, U.K., Italy, Switzerland, Greece, Cyprus and Denmark.

A Scientific Advisory Board, chaired by Pr. Baziel Van Engelen advises the association in all scientific and medical matter.

  • In the domain of care, Euro-DyMA is present everywhere a deficit of knowledge results in a loss of chance for the patients and is highly committed to improve quality of life of patients and families. A library including more than 4000 documents dedicated to DM has been opened to the whole community of associations, scientists and clinicians free of charge in partnership with Myobase portal.
  • In the scientific domain, Euro-DyMA brings the voice of patients in major European programs and awards each year the best scientific or clinical paper of the year in the domain of DM.
  • Clinical trials are knocking at the door today in the U.S., tomorrow in Europe. Euro-DyMA has established strong connections with drug industry in respect of her statutes, to secure from the patient side the pathway to future drugs for patients. Euro-DyMA organizes each year a pharma’s day and other contacts to that purpose.

Euro-DyMA is a proud member of Eurordis, participates in the European Reference Networks and celebrates each year the international awareness day dedicated to DM on September 15.

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