Care and Development

Care guides have been carefully put together by experts in the field as we help you navigate the different stages and developments with Rett syndrome. These guides provide you with easy steps and tools to help your child and family thrive.

Primary Care Guidelines

The Primary Care Guidelines was created by the North American Rett Clinic Collaborative convened by under project leadership of Rett syndrome experts Mary Jones, MD and Katie Hale, RN, NP of UCSF Benioff Children’s Hospital Oakland, and Timothy Benke MD, PhD of Colorado Children’s Hospital. The guidelines will help those providing clinical and specialized care for your child with Rett syndrome.

Download Primary Care Guidelines


Rett syndrome Handbook

The Rett syndrome Handbook is a must-read for every family and an excellent chapter reference for the specialists helping your child. Download or call the office at 1-800-818-7388 to order a hard copy.



Nutritional Guide

The Nutritional Guide is a beneficial tool for improving the health outcomes in Rett syndrome by learning about nutritional options, knowing the potential difficulties that may come with the diagnosis, and providing you with resources and knowledge to make the best choices for your child.

Download the Nutritional Guide


Growth Charts

Using data on over 700 affected patients in the Natural History Study of Rett Syndrome, these references are an accurate representation of growth. As a result of the study, clinicians have gained insight into growth patterns in Rett syndrome which should interpret measurements of height, weight, and head circumference.

Height 0-36 months
Weight 0-36 months
BMI 0-36 months
Head Circumference 0-36 months
Height 2-20 years
Weight 2-20 years
BMI 2-20 years
Head Circumference 2-20 years

Common Medical Concerns


Learn more about seizures with Rett syndrome, epilepsy, and what this diagnosis will look like moving forward.


Disrupted sleep

Learn about the importance of sleep, how to evaluate sleep problems, and how to manage sleep.



Learn about scoliosis and how you can be monitoring for this diagnosis, and care and treatment if it should occur.

Download Information


Learn more about what puberty with Rett syndrome may be like and how you as parents and caregivers can provide the best support.