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.
The Australian Rett Syndrome Study continues to strive towards its aim of understanding the disability of Rett syndrome.
As part of this process, the team is supported by a Consumer Reference Group to ensure family representation and input into issues relating to the design, management and output of the study particularly relating to communication and feedback to families.
The group meets 4 times a year by teleconference and consists of families representing all States of Australia except the Northern Territory.
The Consumer Reference Group representatives are:
New South Wales Jill Grey Ann Papafotiou Cathey Stanberg Sylvana Ward Martine Balkwell Kath Farrell
Victoria Julie Trigg
Western Australia Sana'a Faydi Teresa Pracilio
Queensland Kelly Backhouse Tracey Thomas Emma Reilly