Resources
Family resources
Practical resources for families, caregivers and clinicians · produced by RSE and our member associations across Europe.
Communication
Rett syndrome communication guidelines
Practical recommendations for caregivers and communication professionals to support communication development for people with Rett syndrome.
Rett syndrome severely impairs speech, hand use and motor coordination — these guidelines are an essential tool to improve quality of life and enable more effective expression.
Rett Resource
Comprehensive guidance on care
A practical reference for families, caregivers and clinicians on the medical and day-to-day management of Rett syndrome.
Covers bone health, drooling, depression, epilepsy, GI issues, genetics, nutrition, scoliosis, sleep, stereotypies, and common therapies including hippotherapy, hydrotherapy, music therapy, occupational and physical therapy.
Literature
Books about Rett syndrome
An extensive list of books and publications about Rett syndrome, organised chronologically — a starting point for further reading.
Covers parent memoirs, clinical reference works, picture books for siblings, and academic publications from across Europe.