First published Monday 30 December 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.
Helen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians at the Shenzhen Children's Hospital and the families from the Shenzhen Rett Syndrome Family Association. This is a wonderful opportunity to make links with those affected by Rett syndrome in our region. They are also keen to collaborate in a small study in which we will assess the effects of early intervention on young girls with Rett syndrome. We are hoping that the pilot study will begin in January 2014.
First published Monday 30 December 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