Rett Syndrome Europe
Supporting families and advancing research on Rett syndrome – across Europe.
Rett Syndrome Europe (RSE) is a non-profit association representing the interests of people with Rett syndrome and their families across Europe. We work alongside national Rett syndrome associations, clinicians and researchers to improve care, advance research, and raise awareness.
Understanding Rett syndrome
A rare, genetic, neurological condition.
After a period of near-normal early development, children (mainly girls) experience a regression in mobility, speech and hand use, usually between the ages of one and two.
Our flagship initiatives
Three programmes driving research, dialogue and clinical excellence.
RSE coordinates three flagship programmes that work alongside our member associations, from accelerating treatment research to bringing the European Rett community together.
★ European patient registry
rettX — Unveiling hope for Rett syndrome
The European patient registry where families help advance care, research and treatments for Rett syndrome — across every country, in one secure place.
◇ Expert convening · Madrid 2026
Rett Forum — European Edition 2026
The first pan-European expert convening on standards of care for Rett syndrome. Six thematic working groups drafting the first European consensus-based standards.
⚕ Scientific guidance
Scientific Advisory Board
An independent group of leading clinicians and researchers who advise RSE, review emerging evidence, and support our member associations in interpreting new research.
Help us go further
Every contribution moves Rett research forward.
Donations support our flagship initiatives, family resources, and the work of our member associations across Europe. RSE is an entirely volunteer-led non-profit — every euro goes to programmes.
Secure payment · tax-deductible in many EU countries
Latest news
Stories, research updates, family voices.
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rettX: Building a Patient-Led Rett Syndrome Registry for Europe
rettX is the pan-European, patient-led Rett syndrome registry led by Rett Syndrome Europe, presented at ECRD 2026. Learn what it is and how families…
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Consistent Unmet Needs and Fragmented Care in Rett Syndrome Across Europe
A multi-country caregiver study presented by Rett Syndrome Europe at ECRD 2026 reveals consistent unmet needs and fragmented care across Europe.
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Rett Syndrome Europe at ECRD 2026: Advancing Visibility, Data, and Care
Rett Syndrome Europe took part in ECRD 2026 with two posters — the rettX patient registry and a study on unmet needs and fragmented…