The links to the websites that follow can be classified into two broad groups, namely, those with content totally devoted to Rett syndrome and those which concern facets of life which are important for the Rett syndrome individual and her/his family.

Links specific to Rett syndrome websites which will assist in gaining a greater appreciation of Rett syndrome, both in Australia and overseas

Rett syndrome Associations/Groups

Circle of Silent Angels (Australia)
Ontario Rett Syndrome Association (Canada)
Rett Syndrome Europe
Indian Rett Syndrome Association
Rett New Zealand
Rett Syndrome Research Trust (USA)
International Rett Syndrome Foundation (USA)
Girl Power 2 Cure (USA)
Rett.com (Information and inspiration for the Rett syndrome community)
Rett UK

Research

The Australian Rett Syndrome Study, Telethon Kids Institute (Australia)
InterRett (Database which collects information on the syndrome via questionnaires) (International)
Laboratory of Human Neurogenetics (France)
RettBASE (MECP2 gene mutation database)

Centres of expertise

The Blue Bird Circle Rett Centre (Baylor College of Medicine, Houston, USA)
The Swedish Rett Centre
College for Profound Education, The Children’s Trust Tadworth (England)

Social networks

ANZACRett (Australia)
Living with Rett syndrome (England)
This Rett (syndrome) Life (Australia)
Rett Syndrome Australia
RareConnect (Connecting rare disease patients globally) (Europe)

 

Links specific to communication, education, recreation and disability resources

The following websites are a sample of what is available online regarding the topics of communication, education, recreation and disability resources.

Communication and/or education

Simplified technology, Linda Burkhart (USA)
Link-AT Assistive Technologies (Australia)
Zyteq
Focused Learning Solutions, Susan Norwell (USA)
Anne McDonald Centre (Australia)
Adapting creatively (USA)
Teaching learners with multiple needs (USA)
Glenda’s assistive technology – Switch use (USA)
Jane Farrall Consulting (Australia)
Maths and reading intervention (USA)
Assistive Technology (USA)
Worksheets for all academic areas with daily and monthly themed events that parents can download to use at home (USA)
Educational resources, parent friendly (USA)
Fun, education (USA)

Play

Dr Seuss games, books, etc.
Puzzles, games
Free online games, puzzles (USA)
Games that uses earobics (USA)

Disability resources (national)

The selected resources listed below are all at an Australian level of organisation. Those additional disability resources that exist at the State, Territory and local government levels, are not listed.

Information for carers (Australia)
Children with a Disability Australia
Disability Care Australia
Australian Government – Department of Families, Housing, Community Services and Indigenous Affairs
Riding for the Disabled Association of Australia
Australian Music Therapy Association