START mutual support

In 1993, a germ of an idea was born 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.

GATHERING MOMENTUM spreading the word

Paris, 2000: in order to enhance our strength, it was decided to formalize the association, giving it a new name: RETT SYNDROME EUROPE (RSE).

At the Budapest meeting in 2001, 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.


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

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