These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
Professor Helen Leonard and Dr Jenny Downs recently visited Shenzhen in China to meet Chinese families with a daughter with Rett syndrome and child neurologists from the Shenzhen Children's Hospital.
The meeting was organized by the Rett Syndrome Family Association and was the first with international speakers. Professor Leonard spoke about the clinical presentation of Rett syndrome and how it can be studied.
Dr Downs spoke about motor skills and their development and how they can be assessed and managed.
This was a wonderful opportunity to meet girls with Rett syndrome and their families, to promote understanding about Rett syndrome, and to develop relationships with both families and clinicians for future efforts to improve outcomes for those affected by Rett syndrome.