Links to the best online information about Rett Syndrome

Look also on the Research, News and Personal Stories pages for more specific links.

International Rett Syndrome Foundation

The International Rett Syndrome Foundation has an excellent website with all the best information and is fully up to date on medical, research and practical help. (Note that the International Rett Syndrome Foundation was formed in July 2007 when the International Rett Syndrome Association and the Rett Syndrome Research Foundation merged).


InterRett, or the International Rett Syndrome Database, is a project gathering information and creating an online database about individuals with Rett syndrome for use in research on the clinical features and genetic characteristics of Rett syndrome. The AussieRett, or the Australian Rett Syndrome Study is the Australian study.

Rett Syndrome Research Trust

The Rett Syndrome Research Trust, RSRT, is a nonprofit research organization devoted to the development of treatments and cures for Rett Syndrome.

Rett University

Rett University is an e-learning platform specifically designed for educators and therapists of Rett Syndrome students. Experienced professionals share their cutting-edge knowledge on how to support their students with Rett Syndrome and push them to their highest levels of academic, physical and personal achievement.

Rett Syndrome News

Rett Syndrome News is a well-informed news and information website that frequently publishes research articles. You can subscribe to their mailing list and get regular updates delivered to your inbox.

Online Medilian Inheritance in Man

The Online Medilian Inheritance in Man database of genetic disoders has a very scientific treatment of Rett syndrome, complete with references to papers in medical journals.

National Institute of Neurological Disorders and Stroke

The National Institute of Neurological Disorders and Stroke (USA) offers a fact sheet with a good coverage of Rett syndrome information.

Halburg Trust

We would like to express our support for the Halberg Trust. The Halberg Trust aims to support all children with a disability who want to be involved in active leisure or recreation alongside their peers in an inclusive environment. The Halberg Trust Activity Fund provides grants to young people living with a disability who want to be involved in sport and leisure - this can be equipment or lessons for example swimming lessons, tennis lessons, customized trikes, trampolines etc.

Focused Learning Solutions

Susan Norwell runs a company Focused Learning Solutions dedicated to learning for children with significant disabilities.