14:00–16:00
Programme
Programme
Three days of strategic inputs and extended working group development, in Madrid.
Draft programme — subject to change
Draft timetable for 6–8 November 2026. Two parallel tracks share plenaries, breaks and joint sessions. Times, sessions and session leads remain subject to confirmation.
A collaborative working meeting
Rett Forum establishes the foundations for the guidance, recommendations and coordinated action that follow it. Across three days, six thematic working groups agree their scope, priority questions and evidence needs, propose workstreams, name leads, and draft a post-Forum development plan.
Friday · 6 November Arrivals and informal networking
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Shared programme
16:00–16:30
Opening welcome and practical orientation
RSE leadership and the SAB Chair confirm the Forum aims, how the working groups will run, and what the weekend is expected to produce.
16:30–17:00
Informal networking and introductions
A simple, facilitated format to help participants connect across countries, disciplines and working groups.
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Working groups
17:00–18:00
Meet your working group
Participants meet their group chairs and co-chairs, go through the group’s topic, and pick out the first discussion priorities for Saturday.
Patient representatives
17:00–18:00
Open discussion
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Shared programme
18:00–19:00
Unstructured networking
19:30–21:00
Networking dinner
Informal standing dinner with finger food.
Who takes part on Friday
- Open to all participants — clinicians, researchers, national association representatives and industry partners.
- “Meet your working group” is for working group members.
- No preparation or presentation is expected from participants.
Saturday · 7 November Strategic inputs and extended working group development
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Shared programme
09:00–09:20
Strategic plenary 1: Forum objectives and output expectations
Sets out what each working group is expected to produce, so every group starts from the same understanding of the weekend’s deliverables.
09:20–09:45
Strategic plenary 2: Methodology for developing future guidance and consensus outputs
Agrees a shared approach to reviewing evidence and building consensus in the months after the Forum.
09:45–10:30
Plenary 3: Patient involvement in the regulatory process: the role of patient experience data
Dr Kieran Breen
Vice-Chair, Committee for Advanced Therapies (CAT), European Medicines Agency
About the speaker
Dr Kieran Breen is Vice-Chair of the Committee for Advanced Therapies (CAT) at the European Medicines Agency (EMA). The European Commission nominated him as a representative of the patient organisation Parkinson's Europe. He has an academic background and is head of research at a UK healthcare charity focused on treating people with severe mental illness. At the EMA, he is particularly interested in using real-world data to understand disease progression and how it can be used in regulatory decisions. He also leads the CAT workstream that promotes patient experience data to support medicines applications.
10:30–11:00
Coffee break
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Working groups
11:00–12:30
Working group session 1: Scope, gaps, and priority questions
Each group confirms its scope, and agrees the most significant gaps and the priority questions it wants to address.
Patient representatives
11:00–12:30
RSE General Assembly · part 1
Member-governance session for Rett Syndrome Europe member associations.
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Shared programme
12:30–14:00
Lunch
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Working groups
14:00–15:30
Working group session 2: Map priority action areas and evidence needs
Each group maps its priority action areas and evidence needs, and sketches out the deliverables it could develop after the Forum.
Patient representatives
14:00–15:30
RSE General Assembly · part 2
Continuation of the member-governance session.
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Shared programme
15:30–16:00
Coffee break
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Working groups
16:00–17:00
Cross-working group exchange: dependencies and shared issues
Groups surface the issues they have in common, and agree which group carries each one forward.
17:00–18:00
Working group session 3: Develop workstreams and identify leads
Each group proposes its workstreams, names leads and key contributors, and records the questions still left open.
Patient representatives
16:00–18:00
Patient organisation programme
Details to be confirmed.
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Shared programme
18:00–18:30
End-of-day output check
Short updates from each group, and a steer on priorities for Sunday.
19:30–21:00
Dinner
Who takes part on Saturday
- The three strategic plenaries are open to all participants, including industry partners.
- Working group sessions and the cross-group exchange are for the members of each group. Industry partners do not attend.
- Each working group includes 1–2 patient advocacy representatives. Other national association representatives follow the patient-representative track; the General Assembly is for RSE member associations.
Participation across the two tracks will be coordinated with patient advocacy representatives before the Forum.
Sunday · 8 November Final outputs, action plans, and implementation roadmap
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Working groups
09:00–10:30
Working group session 4: Consolidate scope, priorities, and post-Forum plan
Each group consolidates its scope, priority questions, workstreams, leads and immediate next steps.
Patient representatives
09:00–10:30
Patient organisation programme
Details to be confirmed.
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Shared programme
10:30–11:00
Coffee break
11:00–12:30
Working group progress review
Each group reports back concisely: its scope, priority questions, proposed workstreams, leads, and the support it needs.
12:30–13:30
Lunch
13:30–14:30
Joint roadmap session: European Rett research and care network
Draws the groups together into a shared post-Forum roadmap, with cross-group dependencies, timelines and coordination needs.
14:30–15:00
Implementation commitments and governance
Agrees governance, the coordination process, first milestones, and who is responsible for developing the outputs after the Forum.
15:00–15:30
Closing session
Confirms the agreed next steps, leads, timelines and the process that follows the Forum.
Who takes part on Sunday
- Working group session 4 is for the members of each group, including its 1–2 patient advocacy representatives.
- Access for industry partners to the progress review, roadmap, governance and closing sessions is still to be confirmed.
What each working group leaves with
Every group finishes the Forum with a realistic set of next-step outputs to develop afterwards.
- Defined mandate and scope.
- Priority gaps and questions to address.
- Proposed deliverables to be developed after the Forum.
- Named action owners and contributors.
- Immediate post-Forum next steps.
- Indicative timeline for developing recommendations or guidance after the Forum.
- Draft post-Forum workplan with milestones and review points.
Who takes part, and how
Clinical and research experts
The working groups are made up of clinicians, researchers and specialists from across Europe, and are led by their chairs and co-chairs. Their role is to:
- Bring clinical and research expertise in the group’s focus area.
- Compare practice and evidence across countries.
- Agree the group’s scope, priority gaps and questions.
- Take on workstreams and named responsibilities for the work that follows the Forum.
Patient advocacy representation
Each working group will include 1–2 patient advocacy representatives, so that recommendations and action plans are grounded in lived experience and reflect patient and family priorities. Their role is to:
- Bring patient and family priorities.
- Flag feasibility and quality-of-life implications.
- Comment on whether recommendations are understandable and implementable.
- Help identify gaps from the patient and community perspective.
Industry participation
Industry representatives will not attend working group discussions or take part in consensus development, prioritisation, drafting, or decision-making. Their involvement will be limited to open plenary sessions, networking opportunities, and structured input mechanisms where appropriate. Dedicated sessions with patient representatives run in parallel with, and separately from, the working groups.
Be part of the conversation
Rett Forum is an invitation-only gathering. For enquiries about participation or sponsorship, get in touch.