About us

Short History

The idea of RSE was born in 1993, in the corridors of the Medical World Conference on Rett Syndrome, in Antwerp (Belgium). This was to create an organisation which would enable European national associations to meet each other on a regular basis.

Following this, in March 1994, representatives from 14 countries met for the first time officially in Luxemburg, where the EUROPEAN ASSOCIATION FOR RETT SYNDROME (E.A.R.S.) was founded. Our objectives were to exchange practical information relating to day- to-day management, therapies, care, equipment, etc; to improve communication between Rett families in Europe; to assess current and support new research projects.

In year 2000 during the meeting in Paris, in order to enhance our strength, it was decided to formalize the association, giving it a new name: RETT SYNDROME EUROPE (RSE). And a year later, in 2001 at the Budapest meeting, the statutes were approved and signed by representatives from Austria, Belgium, Denmark, Finland, France, Germany, Hungary, Italy, Malta, Norway, Poland, Serbia, Slovakia, Sweden, Spain, Turkey and the United Kingdom.

Aims of RSE

  • To make Rett syndrome better known to the public, professionals, carers and those who are directly concerned in all European countries
  • To improve communication within the European Rett community
  • To promote, as a representative European organisation, the interests of people with Rett syndrome and their families
  • To expand RSE to all European countries and to assist, if necessary, in the creation of national associations
  • To promote research into Rett syndrome

Executive Board

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Becky Jenner

Stella Peckary

Laura Kanapieniene

Sandrine Eifermann Soutarson

Bojana Milanov

Official documents

Reports from General Assembly meetings:

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