Care Guides

Rett Syndrome Primary Care Guidelines

The Rett Syndrome 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. Please share this document with your child’s care team at your next visit.

Rett Syndrome Handbook     

The Rett Syndrome Handbook is often referred to as the "Bible" for Rett syndrome. It is a must-read for every family, and an excellent chapter reference for the specialists helping the child. Download or call the office at 1-800-818-7388 to order a hard copy to learn everything you need to know about Rett syndrome.

Rett Syndrome (Edited by Walter M Kaufmann)

This collection of Rett syndrome literature is the first to be aimed at both clinicians and researchers. It presents a comprehensive overview of the disorder and examines the areas where gaps in knowledge are most significant.  Rett Syndrome is intended to be a guide for both initial examination and in-depth study of the disorder.   It is a practical text for the physician approaching the disorder for the first time and a valuable reference resource for the specialist or researcher.

A Guide to Rett Syndrome from the team at Katie's Clinic for Rett Syndrome

This companion guide was written to help everyone around the child or adult with Rett syndrome understand the basics of the diagnosis, and how to provide the essentials for an enriched life.  This guide is authored by Dr. Mary Jones and the team at the UCSF Benioff Children's Hospital Oakland Rett Syndrome Clinical Research Center of Excellence.  It is ideal for family, friends, educators, therapists, and caregivers. 


Nutritional and Digestive Health Booklet 


Growth References

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

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 this study, the clinicians have gained insight into growth patterns in Rett syndrome which should help interpret measurements of height, weight, and head circumference. Download and print a letter to your child’s physician that introduces the Rett syndrome growth references.

Scoliosis Resources

Scoliosis in Rett Syndrome

Clinical Management of Scoliosis in Rett Syndrome

Profiling Scoliosis in Rett Syndrome

The first 100 days

First 100 Days Pathway

This brochure was created for parents of a newly diagnosed child. We know there is a lot of new language to learn and new systems to navigate. We have created this First 100 Days Pathway to simplify and prioritize this important period of time for you and your family.

Insurance Navigation

Paying for health care (medical services, vision, dental, prescription drugs, therapies, durable medical equipment DME) can be an additional burden to families of children with special needs. For many people, obtaining insurance coverage is a complex process, but it is required in the U.S. and not having insurance could result in both health and financial risks. Understanding, predicting, and managing health care costs begins with understanding your options.