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Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
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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.
MECP2 duplication syndrome is a rare neurodevelopmental disorder that, unlike Rett syndrome, mostly affects boys. Australian families with children with MECP2 duplication syndrome are raising awareness and much needed funding for research into treatment and a cure for this disorder. Part of these funds will go to a research project headed by Dr Helen Leonard at the Telethon Kids Institute.
Recently, the story of a Western Australian family and their sons was shown on the Today Tonight television program. Click here for a link to the program and to learn more about the disorder.