The first pan-European expert convening dedicated to advancing the standard of care for Rett syndrome
Why Rett Forum?
No European consensus guidelines exist for Rett syndrome care. Care quality and access vary dramatically across countries. The treatment pipeline is accelerating. It's time to align.
Draft consensus-based standards of care for Rett syndrome — the first of their kind in Europe.
Build a sustainable European research and care network with shared data through rettX, the pan-European patient registry.
Support early-career researchers and strengthen representation of underrepresented countries.
Programme
Three days designed to move from relationship-building to actionable commitments.
Registration, welcome session, speed networking, country snapshots, and networking dinner.
Scene-setting plenaries, three parallel working group sessions, and ECR mentorship.
Final working group session, presentations, research network roundtable, and next steps.
Working Groups
Six thematic groups, each leaving Madrid with a defined mandate, confirmed leadership, and a 2-year workplan.
Partner with us
Support the first pan-European initiative to harmonize Rett syndrome care — and make a lasting impact for families across Europe.