Links specific to Rett Syndrome

Rett Syndrome Associations/Groups

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 Academy
Rett UK


The Australian Rett Syndrome Study, Telethon Kids Institute (Australia)
InterRett (Database – Questionnaires)
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
The Children’s Trust (England)

Social Networks

Rett Syndrome Australia (Facebook Page)
RareConnect (Connecting Rare Disease Patients Globally)

Communication and/or Education

Simplified technology, Linda Burkhart (USA)
Link-AT Assistive Technologies (Australia)
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)
Assistive Technology
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)


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

Disability Resources (National).

You Are Not Alone : A Carer’s Journey
Children and Young People with a Disability Australia
NDIS: National Disability Insurance Scheme
Riding for the Disabled Association of Australia
Australian Music Therapy Association