Who we are
The European voice of the Rett community.
Rett Syndrome Europe (RSE) is a non-profit federation representing national Rett syndrome associations across Europe. We support families, advance research, and raise awareness, together.
About Rett Syndrome Europe
A federation of families, clinicians and researchers.
Founded in 1994 and based on the work of national member associations, RSE works with clinicians, researchers and policy-makers to improve care, advance research, and raise awareness across Europe.
Our member associations support families locally, through peer networks, family events and information in their own language, while contributing to a shared European mission. RSE coordinates that mission: representing the Rett community to European institutions, funding research priorities, and producing the resources families and clinicians need.
We bring Europe’s Rett community together so that families are supported, voices are heard, and research moves faster.
Our values
Our aims
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
1994
Year RSE was founded in Luxemburg
39
Member associations across Europe
30+
Years of European advocacy since 1994
Volunteer-led, family-driven
Executive Board
RSE is governed by an Executive Board elected by the General Assembly of member associations. Board members serve in a voluntary capacity, representing their national associations.
Open by design
Statutes, accounts and General Assembly minutes are public.
RSE is a non-profit association registered in Europe and governed by an Executive Board elected by the General Assembly of member associations. We publish our full institutional documentation: statutes, annual accounts, activity reports and General Assembly minutes, on a dedicated Transparency page.
Get involved
Find your community in the Rett federation.
RSE is a federation of national associations across Europe. Your closest point of support is usually in your own country, in your own language. If you can’t find an association where you live, our secretariat will point you in the right direction.