Programme
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.
Be part of the conversation
Rett Forum is an invitation-only gathering. For enquiries about participation or sponsorship, get in touch.