Editor’s Note: Our friends at the International Rett Syndrome Federation have endorsed this resource, “Scoliolis in Rett Syndrome.”

From the ‘About’ page: There is limited information in the medical literature regarding the management of scoliosis. We have therefore developed some guidelines to provide information for parents and caregivers and to be helpful to doctors caring for girls and women with Rett syndrome. The main aim of managing scoliosis is to maximise function whilst preventing the progression of the spinal curve. These guidelines are not a formula for every girl with Rett syndrome who develops scoliosis but rather, they highlight the key features of accepted current best practice. They are based on the available medical literature and on expert clinical opinions from various fields.
This booklet was designed to outline some recommended management guidelines for scoliosis in Rett syndrome and provide the relevant background information for parents and clinicians. There is a glossary of terms that you may find helpful on page 22 and the words contained in the glossary are printed in bold the first time they are used in the text.
In addition, we have gathered first-hand accounts from parents regarding their daughter’s scoliosis. These parents have a wealth of knowledge, understanding and experiences of the different aspects of management of scoliosis in Rett syndrome. Parents form an important partnership with their daughter’s doctors, providing perspective and goals that ultimately guide the treatment.

Download the booklet Scoliosis in Rett Syndrome HERE