Flagship initiative
Rett Forum: European Edition 2026
The first European expert convening on standards of care for Rett syndrome. Madrid, 6-7-8 November 2026.
About the forum
A European convening on standards of care.
The Rett Forum brings together clinicians, researchers, family advocates and member-association leaders from across Europe to draft the first European consensus-based standards of care for Rett syndrome.
It’s an initiative of Rett Syndrome Europe, organised in close partnership with our Scientific Advisory Board and our member associations across the continent.
Nov 2026
Madrid, Spain
50–60
Clinicians, researchers and family advocates
30+
European countries represented
Programme
Six working groups, one shared standard.
The forum is structured around six thematic working groups, each focused on a clinical or care domain where European families currently see significant variation between countries.
Working-group titles, leads and the full programme will be published on rettforum.eu in the months leading up to the event.
Why this matters
Europe needs a shared standard.
International consensus statements on Rett syndrome already exist, but they don’t always translate well to European clinical practice: different health systems, different specialist availability, different languages, different recognition pathways.
The Rett Forum aims to close that gap: a single, European reference that families can hand to a new specialist anywhere on the continent and know they’re starting from the same baseline.
Stay close to the forum
Programme and updates on rettforum.eu.
Follow the working groups, registration and the lead-up to November 2026 on the dedicated forum site.