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  • To monitor patterns of Rett syndrome occurrence.
  • To develop and maintain an ongoing data collection which will provide information about:
      • the impact of Rett syndrome on functioning, daily living activities and health;
      • the relationship between genetic and clinical characteristics;
      • the adequacy, availability and quality of treatments and services provided;
      • the use of medical and therapeutic interventions;
      • the impact of Rett syndrome on families in terms of family functioning and support, and financial costs and resources.
  • To provide a population data source for genetic research which is a model for use elsewhere in the world.
  • To share information with medical, educational and health professionals to increase understanding about Rett syndrome.
  • To make available information which can be provided to families of newly diagnosed children to give them some expectations about their child's future.

To find out any more information about how you can be involved, don't hesitate to contact us.


Phone: +61 419 956 946 | +61 8 6319 1761

Telethon Kids Institute