Care Guides

Rett Syndrome Handbook     

The Rett Syndrome Handbook is often referred to as the "Bible" for Rett syndrome. 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.

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.

Forms

Emergency Information Form.