Communication and AAC
Communication development, AAC access, eye gaze technology, implementation across healthcare systems.
Working groups
Working Groups
Six thematic groups, each leaving Madrid with a defined mandate, confirmed leadership, and a 2-year 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
Three facilitated sessions across Saturday and Sunday — comparing practices across countries, identifying gaps, and drafting priorities.
3
After Madrid
Each WG leaves with a defined mandate, confirmed leadership, and a 2-year workplan toward European consensus guidelines.
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.