Press release
Madrid, 5 November 2026 – Rett Syndrome Europe (RSE) will bring together clinicians, researchers, patient organisations and industry partners for Rett Forum 2026, taking place from 6 to 8 November at ILUNION Atrium in Madrid. The meeting aims to strengthen collaboration across Europe and lay the foundations for more consistent care for people with Rett syndrome, a rare neurodevelopmental disorder that mainly affects girls.
Around 100 participants from 25 countries are registered for the invitation-only meeting. Its focus is on working together to identify shared needs, agree priorities and plan the next steps beyond the Forum.
Designed as a working meeting rather than a conventional congress, the Forum has two parallel tracks, with shared plenaries, breaks and joint sessions. Six thematic groups will bring together clinicians, researchers and patient advocates to address communication; neurology, breathing and autonomic function; mobility, scoliosis and motor function; nutrition, gastrointestinal health and growth; wellbeing, pain, sleep and daily management; and clinical trials. The patient organisation representatives will focus on strengthening Rett community representation and strategic plans for the future.
The groups will share their conclusions in joint sessions and contribute to a roadmap for continued collaboration on care standards and research.
“Rett syndrome is rare, and no single country, clinic or association can address its challenges alone. The Forum brings together clinical and research expertise alongside the knowledge and experience of families. We want to use these different perspectives to agree where joint efforts are most needed and how we can continue that work together after Madrid,”
said Pedro Rocha, President of Rett Syndrome Europe.
The Forum is made possible through financial contributions from RSE member associations and grants from industry partners. Its scientific work is led independently by RSE’s Scientific Advisory Board.
About Rett syndrome
Rett syndrome is a rare neurodevelopmental disorder that mainly affects girls and causes significant difficulties with speech, purposeful hand use and movement, with many people requiring a wheelchair for mobility. It can also involve epilepsy, breathing irregularities, feeding and gastrointestinal difficulties, sleep disturbances, scoliosis and reduced bone density, creating complex, lifelong needs that require coordinated care across different specialties.
About Rett Syndrome Europe
Rett Syndrome Europe (RSE) is the European federation of national Rett syndrome associations. It represents people with Rett syndrome and their families and works to improve their care and quality of life across Europe.
More information: www.rettforum.eu
Press contact: Pedro Rocha, procha@rettsyndrome.eu
Rett Syndrome Europe · rettsyndrome.eu Rett Forum 2026 · Madrid · 6–8 November · rettforum.eu
