Downloadable Resources

Primary Care Brochure


2018 Comprehensive Brochure


2018 NHS Info sheet


2018 Impact Report
2017 I
2018 Your Help is our Hope Card
download the card here.


2018 Impact Report
Review the impact made in 2018  downloading the impact report here.
2018 Impact Report
Review the impact made in 2018  downloading the impact report here.
2018 Impact Report
Review the impact made in 2018  download the impact report here.
51 Years Infographic
Our 51 Years of Progress infographic beautifully details's role in the scientific advances that are driving us toward a cure for Rett syndrome.  Click HERE to view this document.
2017 Research One Pager is leading the revolution in Rett syndrome research. View the Research One Pager to see our research driven results.

The Rett Syndrome Handbook
The Rett Syndrome Handbook is often referred to as the "Bible" for Rett syndrome. Download your PDF copy or call the office at 1-800-818-7388 to order a hard copy to learn everything you need to know and more about Rett syndrome.
First 100 Days PathwayWe 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.
2016 Fact Sheet

Click here to view the lastest about what has accomplished with your help!

A Participant's Guide to Drug Research in Rett Syndrome

Download this guide to learn the importance of clinical trials, what particpation means and what your rights are as the parent of a participating child as well as your child's rights as a participant.

Scoliosis Resources
Scoliosis Resources

Below are three resources you can use to help understand more about scoliosis in those with Rett syndrome.
Scoliosis in Rett Syndrome
Clinical Management of Scoliosis in Rett Syndrome
Profiling Scoliosis in Rett Syndrome

Nutritional and Digestive Health Booklet

Download the booklet

Growth References

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. 

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


Download and print a letter to your child’s physician that introduces the Rett syndrome growth references.

A Guide to Rett Syndrome

Click here to see this companion guide 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. 

Una guía para el síndrome de Rett 

Haga clic aquí para ver a una guía escrita para ayudar a todo el mundo alrededor del niño o adulto con síndrome de Rett comprender los conceptos básicos del diagnóstico y cómo proporcionar los elementos esenciales para una vida enriquecida.  Esta guía está escrita por Dr. Mary Jones y el equipo de Hospital Oakland Rett síndrome clínica centro de excelencia la UCSF Benioff infantil en la investigación. Es ideal para familia, amigos, educadores, terapeutas y cuidadores.

Qué es el Síndrome de Rett?

El síndrome de Rett es un trastorno en el desarrollo neurológico infantil caracterizado por una evolución normal inicial seguida por la pérdida del uso voluntario de las manos, movimientos característicos de las manos, un crecimiento retardado del cerebro y de la cabeza, dificultades para caminar, convulsiones y retraso mental. El síndrome afecta casi exclusivamente a niñas y mujeres.