European standards of care
Lay the groundwork for consensus-based European standards of care — a long-term ambition that continues well beyond the Forum.
Collaborative forum · Madrid 2026
Bringing clinicians, researchers, patient organisations and industry partners together to advance 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 clinicians, researchers and patient organisations together to start closing that gap.
~100
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
Working together to advance Rett care
Rett Forum is a collaborative working meeting that lays the foundations for the guidance, recommendations and coordinated action that follow it. The emphasis is on participation, discussion and practical progress rather than formal lectures.
Thematic working groups
Six groups work across the weekend to agree their scope, priority gaps and questions, propose deliverables, name action owners, and draft a post-Forum workplan. Each group includes 1–2 patient advocacy representatives.
Sessions in parallel
Alongside the working groups, dedicated sessions bring patient representatives together with industry partners, and RSE member associations meet for the General Assembly. Timings are still being set.
How the weekend unfolds
- 1Friday
Arrivals and informal networking
Registration, opening welcome and practical orientation, informal introductions across countries and disciplines, and a first meeting with your working group.
- 2Saturday
Strategic inputs and working group development
Three short strategic plenaries, then extended working group sessions on scope, priority questions, evidence needs, workstreams and leads.
- 3Sunday
Final outputs and implementation roadmap
Consolidation of each group’s scope, priorities and post-Forum plan, a joint roadmap session, and agreement on governance and commitments.
Working groups
Six thematic groups, one shared mandate
Each group uses the Forum to refine its objectives, identify gaps and agree the next steps in an ongoing process towards 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 European initiative to harmonise Rett syndrome care — and make a lasting impact for families across Europe.