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
To give you the best experience, this site uses cookies. Learn more about cookies
Translate to:
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.
We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome. We used the Delphi technique to develop the recommendations by working with expert panels of clinicians and researchers who were both multi-disciplinary and international. Whilst not a recipe, the recommendations provide a summary of key points and principles for management in relation to Rett syndrome.
You can download summaries of the recommendations including booklets for families and leaflets for clinicians.
Translations
Český Překlad (Czech) Zlepšování Zdravotního Stavu Dívek S RettovýM Syndromem Informační Příručka Pro Rodiny A Pečovatele Správná Výživa A Trávení
Guidelines for Scoliosis Booklet
Translations
The AussieRett study has published two reports, an inaugural one in 2002 and a follow-up one in 2006.
A Story about Paris: Living with Rett Syndrome
Perth Mother Jessica wrote a book to help Paris' classmates at school understand something about Rett syndrome. It has been written in language suitable for children and young people. You may be interested in having a copy for your own family members to use, especially your other children, when explaining about your daughter's condition.
It would also be a useful addition to school libraries and may be helpful to health professionals.
The book can be purchased from the Telethon Institute for Child Health Research for $10.00 including postage.
To purchase please contact us:
email: aussierett@telethonkids.org.au
phone: (08) 9489 7790/7774 fax: (08) 9489 7700
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