Programme
Three days designed to move from relationship-building to actionable commitments.
At a glance
Friday
Arrivals & Networking
Registration, welcome session, speed networking, country snapshots, and networking dinner.
Saturday
Plenaries & Working Groups
Scene-setting plenaries, three parallel working group sessions, and ECR mentorship.
Sunday
Consolidation & Roadmap
Final working group session, presentations, research network roundtable, and next steps.
Day 1 — Friday: Arrivals and networking
| Time | Session |
|---|---|
| 14:00–16:00 | Forum registration and arrivals |
| 16:00–16:30 | Welcome and introductions — RSE welcome, Forum objectives, and overview of the weekend programme. Chaired by RSE President and SAB Chairperson. |
| 16:30–17:15 | Facilitated speed networking — Structured rounds pairing participants across countries and disciplines. Conversation prompts provided (e.g., "What is the biggest Rett care challenge in your country?"). Facilitated by Working Group Chairs. |
| 17:15–18:00 | Country snapshots — Each member association gives a 2–3 minute update on their current priorities and challenges. Sets a shared baseline before working groups begin. Presented by RSE member association representatives. |
| 18:00–18:30 | Meet your working group — Informal mixer where WG members meet each other ahead of Saturday's sessions. WG chairs briefly introduce themselves and the theme. |
| 18:30–19:30 | Free time and refreshments |
| 19:30 | Networking dinner |
Day 2 — Saturday: Scene-setting and working group launch
| Time | Session |
|---|---|
| 09:00–09:30 | Opening plenary: The state of Rett syndrome care in Europe — Current landscape, disparities, and the case for harmonised standards. Presented by SAB Chairperson. |
| 09:30–10:15 | Plenary: The treatment pipeline, clinical trial readiness, and relevant international programmes — Research landscape update, emerging therapies, active clinical programmes in Europe and internationally, and what Europe needs to prepare. Invited speaker. |
| 10:15–10:35 | Lightning round: Under-represented features in clinical research — Short presentations on breathing irregularities, autonomic dysfunction, pain assessment, bone health, and other features that lack structured research attention. Each ends with: which WG should own this topic? Invited speaker. |
| 10:35–11:05 | Coffee break |
| 11:05–11:15 | Working group methodology and expected outputs — How the six groups will operate during and after the Forum. Presented by WG coordinators. |
| 11:15–12:45 | Working group session 1 (parallel) WG1: Communication and AAC · WG2: Neurology, breathing, and autonomic function · WG3: Mobility, scoliosis, and motor function · WG4: Nutrition, GI, and growth · WG5: Wellbeing, pain, sleep and daily management · WG6: Clinical trial readiness in EU, functional outcome measures Led by respective WG Chairs and Co-Chairs. |
| 12:45–13:45 | Lunch |
| 13:45–14:45 | Plenary: Harmonising outcome measures across Europe — Current variability, international comparisons, and steps toward alignment. Invited speaker. |
| 14:45–16:15 | Working group session 2 (parallel) — Each WG identifies gaps and drafts initial priorities. Structured prompts: (a) which outcome measures are used across your countries? (b) where is there the most variability? (c) what would you prioritise for harmonisation? Led by respective WG Chairs and Co-Chairs. |
| 16:15–16:45 | Coffee break |
| 16:45–17:45 | Plenary: Transition from paediatric to adult care — Shared challenges, national approaches, and what a European framework could look like. Invited speaker. |
| 17:45–18:30 | ECR–expert mentorship session — Structured pairing and facilitated discussion. Facilitated by SAB members. |
| 18:30–19:00 | Working group rapporteurs: Day 2 progress summary — Brief reports from each WG Chair. |
Day 3 — Sunday: Consolidation and roadmap
| Time | Session |
|---|---|
| 09:00–09:30 | Family and patient perspectives — Patient advocates present priorities from the family perspective. Presented by patient and family advocates. |
| 09:30–11:00 | Working group session 3 (parallel) — Each WG defines: (a) mandate and scope, (b) leadership and membership, (c) 2-year workplan with milestones. Led by respective WG Chairs and Co-Chairs. |
| 11:00–11:30 | Coffee break |
| 11:30–12:30 | Plenary: Working group presentations — Each WG presents its mandate, priorities, and roadmap for review and feedback. Presented by WG Chairs. |
| 12:30–13:30 | Lunch |
| 13:30–14:30 | Plenary roundtable: Building the European Rett syndrome research network — Cross-WG collaboration, data sharing (including rettX), and coordination mechanisms. Moderated by WG Chairs. |
| 14:30–15:15 | Plenary: Next steps and governance — Steering committee, digital collaboration platform, timeline to next meeting, and commitments. Chaired by RSE President and SAB Chairperson. |
| 15:15–15:45 | Closing session — Summary of key outcomes, participant reflections, and formal close. WG Chairs and RSE President. |
Working Groups
Six thematic groups, each leaving Madrid with a defined mandate, confirmed leadership, and a 2-year workplan.
WG1
Communication and AAC
Communication development, AAC access, eye gaze technology, implementation across healthcare systems
WG2
Neurology, breathing, and autonomic function
Epilepsy, non-epileptic events, EEG, breathing irregularities, autonomic dysfunction
WG3
Mobility, scoliosis, and motor function
Physiotherapy, scoliosis, gait, postural support, bone health, stereotypies
WG4
Nutrition, GI, and growth
Feeding difficulties, GI disorders, growth monitoring, nutritional support, drooling
WG5
Wellbeing, pain, and daily management
Emotional health, sleep, anxiety, pain assessment, quality of life, adult care transition
WG6
Clinical trial readiness in EU
Site capability, regulatory alignment, trial design, outcome measures, registries, ethics
Be part of the conversation
Rett Forum is an invitation-only gathering. For enquiries about participation or sponsorship, get in touch.