Rett Syndrome Europe
Budget
€10 — €0
EP Access
0
accredited persons
Staff
5
0.5 FTE
EU Grants
€2,000
Mission & Goals
Rett Syndrome Europe (RSE) is a non-profit, patient-focused European umbrella organisation representing people living with Rett syndrome and their families across Europe. Its primary focus is to advocate for the interests, needs, and rights of patients with Rett syndrome and their carers, and to ensure that their perspectives are represented at European level in areas related to healthcare, research, medicines, and public policy. RSE is governed by patients’ families and carers, who form the majority of its governing bodies, in line with the definition of a patient organisation established by the European Medicines Agency. The organisation acts as the European representative body for national Rett syndrome associations, promoting coordination, knowledge exchange, and a unified patient voice across Member States.
EU Legislative Interests
RSE’s mission is to represent and advocate for the needs and interests of people living with Rett syndrome and their families across Europe. As a non-profit European umbrella organisation led by parents and carers, RSE focuses on: - Raising awareness of Rett syndrome across European countries among clinicians, researchers, policymakers, and the public; - Improving communication and collaboration within the European Rett community by supporting national Rett organisations and connecting families, professionals, and researchers; - Promoting research into the causes, care, and treatment of Rett syndrome by facilitating information exchange, dissemination of research summaries, and engagement with scientific stakeholders; - Supporting the development and sharing of high-quality, accessible resources to guide the care and daily management of individuals with Rett syndrome; - Expanding RSE’s membership and influence across Europe to ensure that all national Rett groups have a voice at the European level.
Communication Activities
RSE has a strong European focus through its role as an umbrella federation for Rett associations across the EU and wider Europe. It currently includes member associations or representatives from approximately 25 European countries, supporting coordination and information exchange between these groups. RSE promotes activities that build European networks, including collaboration with EURORDIS (The European Rare Disease Organisation) and participation in European Rare Disease Congresses, training programmes for rare disease advocates, and other EU-level rare disease policy discussions. RSE also facilitates projects that bring multiple European national associations together, such as multilingual informational resources and shared best practices for care and advocacy. Furthermore, RSE supports pan-European initiatives like the rettX patient registry, designed to collect comprehensive clinical and genetic data from individuals with Rett syndrome across Europe, which can ultimately support research and regulatory understanding of the condition.
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
Members of Eurordis and WOLF (World Leaders for Rett Syndrome)
Organisation Members
https://www.rettsyndrome.eu/member-associations/
Commissioner Meetings
No recorded meetings with EU commissioners.