The European Charcot-Marie-Tooth Federation (ECMTF)

The European CMT Federation is a voluntary non-profit federation registered in Belgium, formed by European national organizations supporting people affected by Charcot-Marie-Tooth disease, a rare peripheral neuropathy affecting hands and feet.

The Mission of the European CMT Federation:

  • Promote communication and collaboration between CMT organizations/charities.
  • Work together to fund research projects that are beyond the scope of the individual organizations.
  • Work together to advocate for greater CMT research funding from organizations such as the National Institutes of Health in the United States, European Union and the Muscular Dystrophy Associations/charities worldwide.
  • Work collaboratively to promote International awareness of CMT.
  • Share expertise and best practice for the overall promotion and success of the individual CMT organizations.
  • Work towards the availability of an affordable and effective treatment for CMT; and to advocate for reimbursement of such treatments.
  • Provide basic protocols and advice for the creation of further CMT organizations where no such organization exists currently.
  • Provide basic information on CMT to individuals (in English) where there currently is no other support.

The European CMT Federation was formed after a meeting of a number of representatives of CMT organizations at a CMTR Research Consortium Meeting in Italy in 2016.  Representatives of CMT United Kingdom, ACMT-Rete, CMT France, NEMA and Spierziekten Nederland formed the working committee to create statutes and the mission of the organization.  These representatives formed the first Board Members of ECMTF.

In the future, we would hope to be able to organize and host Conferences in Europe for organizations and for individuals.