First published Monday 1 April 2013.
Contact Us
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761
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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.
Professor Helen Leonard and Dr Jenny Downs recently visited Shenzhen in China to meet Chinese families with a daughter with Rett syndrome and child neurologists from the Shenzhen Children's Hospital.
The meeting was organized by the Rett Syndrome Family Association and was the first with international speakers. Professor Leonard spoke about the clinical presentation of Rett syndrome and how it can be studied.
Dr Downs spoke about motor skills and their development and how they can be assessed and managed.
This was a wonderful opportunity to meet girls with Rett syndrome and their families, to promote understanding about Rett syndrome, and to develop relationships with both families and clinicians for future efforts to improve outcomes for those affected by Rett syndrome.
First published Monday 1 April 2013.
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761