A Telethon Kids Institute Website
Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.
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.
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Speakers explored aspects of communication, health, therapies, education, caring for the carer, government initiatives, trusts, siblings and family, adulthood, and equipment. Find out more information about the conference's key speakers.
During the conference, Helen spoke about the contribution families like yourselves have made to research outcomes in Rett syndrome, through your participation in our ongoing investigations.
See Helen's presentation:
First published Thursday 19 November 2015.
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