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.

Rett syndrome HandbookRett 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.



Rett syndrome HandbookPrimary Care Guidelines

The Rett Syndrome Primary Care Guidelines provide suggested visit schedules by clinical area of assessment, specific concerns to look for and timelines for follow up appointments. Download today to ensure the best care for your child.



Nutritional GuideNutritional 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


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

Download Information

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.


OTHER Common Medical Concerns

Learn more about common medical concerns in Rett syndrome, including seizures, disrupted sleep, puberty, and more by searching our RettEd Video Library Playlist on YouTube.



A FIRST FOR RETT: FDA approves Trofinetide for the treatment of Rett syndrome!
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