Communication and AAC
Communication development, AAC access, eye gaze technology, implementation across healthcare systems.
Working groups
Working Groups
Six thematic groups, each leaving the Forum with a defined scope, priority questions, proposed deliverables, named owners and a draft post-Forum workplan.
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.
How the groups work
1
Before Madrid
Each group receives a briefing document summarising the current evidence base, known gaps, and key questions for their theme.
2
During the Forum
Four working sessions across Saturday and Sunday, plus a cross-group exchange on dependencies and shared issues, and a progress review.
3
After Madrid
Each group continues on its own workplan — developing the deliverables, evidence reviews and draft guidance agreed at the Forum, against milestones and review points.
Patient advocacy representation
Each working group includes 1–2 patient advocacy representatives, so that priorities and action plans stay grounded in lived experience. 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.
The longer-term ambition
European consensus standards of care are the long-term goal of this work. The Forum establishes the foundations — scope, priorities, responsibilities and development plans. Guidance and recommendations are developed afterwards, not completed or approved during the weekend.
Interested in contributing?
Working group participation is by invitation. If you're a clinician, researcher, or specialist working in Rett syndrome, we'd love to hear from you.