European guidelines
Draft consensus-based standards of care for Rett syndrome — the first of their kind in Europe.
Expert convening · Madrid 2026
The first pan-European expert convening dedicated to advancing the standard of care for Rett syndrome
6–7–8 November 2026Hotel ILUNION Atrium, MadridInvitation-only · In-person
A Rett Syndrome Europe initiative
Why Rett Forum
No European consensus exists for Rett syndrome care. It's time to align.
Care quality and access vary dramatically across countries while the treatment pipeline accelerates. The Forum brings Europe’s experts into one room to change that.
~60
Expert participants
30+
Countries
6
Working groups
2.5
Days of collaboration
Research network
Build a sustainable European research and care network with shared data through rettX, the pan-European patient registry.
Next generation
Support early-career researchers and strengthen representation of under-represented countries.
Programme
Three days, from first handshake to firm commitments
A deliberate arc — relationship-building on day one, deep collaborative work on day two, and concrete roadmaps by the close.
- 1Friday
Arrivals & Networking
Registration, welcome session, speed networking, country snapshots, and networking dinner.
- 2Saturday
Plenaries & Working Groups
Scene-setting plenaries, three parallel working group sessions, and ECR mentorship.
- 3Sunday
Consolidation & Roadmap
Final working group session, presentations, research network roundtable, and next steps.
Working groups
Six thematic groups, one shared mandate
Each group leaves Madrid with a defined scope, confirmed leadership, and a two-year workplan toward the first European consensus standards.
Communication and AAC
Communication development, AAC access, eye gaze technology, implementation across healthcare systems.
Neurology, breathing, and autonomic function
Epilepsy, non-epileptic events, EEG, breathing irregularities, autonomic dysfunction.
Mobility, scoliosis, and motor function
Physiotherapy, scoliosis, gait, postural support, bone health, stereotypies.
Nutrition, GI, and growth
Feeding difficulties, GI disorders, growth monitoring, nutritional support, drooling.
Wellbeing, pain, and daily management
Emotional health, sleep, anxiety, pain assessment, quality of life, adult care transition.
Clinical trial readiness in EU
Site capability, regulatory alignment, trial design, outcome measures, registries, ethics.
Get involved
Partner with us
Support the first pan-European initiative to harmonize Rett syndrome care — and make a lasting impact for families across Europe.