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.
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: firstname.lastname@example.org phone: (08) 9489 7790/7774 fax: (08) 9489 7700