Working Groups
Six thematic groups, each leaving Madrid with a defined mandate, confirmed leadership, and a 2-year workplan.
Communication development, AAC access, eye gaze technology, implementation across healthcare systems
Epilepsy, non-epileptic events, EEG, breathing irregularities, autonomic dysfunction
Physiotherapy, scoliosis, gait, postural support, bone health, stereotypies
Feeding difficulties, GI disorders, growth monitoring, nutritional support, drooling
Emotional health, sleep, anxiety, pain assessment, quality of life, adult care transition
Site capability, regulatory alignment, trial design, outcome measures, registries, ethics
How the groups work
Each group receives a briefing document summarising the current evidence base, known gaps, and key questions for their theme.
Three facilitated sessions across Saturday and Sunday — comparing practices across countries, identifying gaps, and drafting priorities.
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.