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← Rett Resource

English / English

20 articles on Rett syndrome care, written by clinicians and therapists. All resources are free to download and share with families.

About this collection

This Rett Resource aims to provide comprehensive information on a range of issues covering many of the complex features of Rett syndrome, giving guidance on day-to-day management.

It will be an invaluable resource as well as a significant guide for families, therapists and others who are involved in working with and supporting people with Rett syndrome.

Under no circumstances are you authorised to publish these articles on other websites, and any translation MUST be carried out by an approved and professional translator. If you are in any doubt, please contact info@rettsyndrome.eu for advice.

Important note

Medical & health

Conditions and clinical care that families and physicians most often look for guidance on.

Epilepsy in Rett syndrome Nadia Bahi Buisson, Marie Hully, Elisabeth Celestin Genetic aspects of Rett syndrome Laurent Villard Management of gastrointestinal disorders in Rett syndrome Jenny Downs & Helen Leonard Managing bone health in Rett syndrome Jenny Downs & Helen Leonard Managing poor growth and nutrition in Rett syndrome Jenny Downs & Helen Leonard Managing scoliosis in Rett syndrome Jenny Downs & Helen Leonard Nutrition and hydration Irène Benigni Puberty in Rett syndrome Hilary Cass Scoliosis in Rett syndrome Sabine Leimer Sleeping problems Lietaer Caroline & Robert James Goddard Stereotypies and movement disorders in Rett syndrome Nadia Bahi Buisson, Marie Hully, Elisabeth Celestin

Therapies & rehabilitation

Therapeutic approaches that can support motor, communication and quality-of-life outcomes.

Hippotherapy: developing motor and communication skills Lena Svedberg Hydrotherapy Stella Peckary Music therapy: meeting physical, emotional, cognitive and social needs Märith Bergström-Isacsson Occupational therapy for hands: facilitating adults’ daily living activities Asa-Sara Sernheim Physical therapy for Rett syndrome Meir Lotan Physiotherapy: developing and improving motor functions Lena Svedberg

Behaviour & daily life

Practical guidance on the day-to-day situations families navigate at home.

Drooling management Helen Cockerill Emotion, behaviour and depression Sarojini Budden Screaming episodes in Rett syndrome Hilary Cass