Newly Diagnosed with Rett Syndrome

You are not alone.

Receiving a Rett syndrome diagnosis can be overwhelming, and you might not know where to begin. At IRSF, we want to provide you with the tools you need to cope with this new diagnosis and connect you with people and families that are on the same journey.
When you’re ready, we’re ready to help you thrive. 

Samantha and her daughter, Macy

Register with IRSF

The first step is to register. When you register with IRSF, you take the first step in receiving the support and resources you need to empower your family.

Our Family & Community Engagement Manager, Samantha Brant (mom to Macy, RTT) will reach out to you right away to make sure you get our free Newly Diagnosed Rett Syndrome Toolkit. We’ll start to share the latest research, be here help you understand Rett syndrome, and provide you with opportunities to connect with your Rett syndrome community.

Register to receive your Free Rett Syndrome Toolkit


“Getting Maylee’s diagnosis was one of the scariest and darkest times of our lives. But the outpouring of love and support we received from International Rett Syndrome Foundation helped us to pick ourselves up and help to carry Maylee through this journey. Knowing all the support we had helped us to be the best caregivers we could possibly be for our sweet girl!”
– Mallorie and Nathan Stump

Resources for Newly Diagnosed Families

These resources and more are part of the Rett Syndrome Toolkit, free for all newly diagnosed families.
Register to request your mailed toolkit today. (Mailing only available to addresses in the United States at this time)

First 100 Days Pathway

We know there is a lot of new language to learn and systems to navigate. So we have created this First 100 Days Pathway to guide you as you start your Rett journey and prioritize what needs to be done in the first 100 days after diagnosis.

The Rett Syndrome Handbook

Everything you need to know about Rett syndrome is in The Rett Syndrome Handbook. This valuable tool is the encyclopedia on Rett syndrome written by Rett experts including Kathy Hunter, parent and founder of our legacy foundation, IRSA.

Comprehensive Care Guidelines

This is a medical resource, intended for you to share with your providers to ensure your loved one is receiving care that is recommended by leading Rett syndrome experts. Download the full guidelines and Quick Reference Guide today.

We are with you every step of the way

Wherever you are on your Rett Journey, IRSF is with you. Learn about the resources available to help you thrive.

Download The Rett Journey Guide

Rett Syndrome CME Opportunities

For pediatricians, neurologists, or anyone involved in the treatment of patients with Rett syndrome.

Register for the below for these FREE continuing medical education (CME) opportunities. Learn about Rett syndrome from diagnosis to care and treatment from a panel of experts and parents of children with Rett.