Newly Diagnosed: You Are not alone
Receiving a Rett syndrome diagnosis can be overwhelming and you might not know where to begin. At Rettsyndrome.org we want to provide you with the tools you need to cope with this new diagnosis and begin to answer your questions. We are here to provide you with resources and connect you with people and families that are on the same journey. You are not alone.
Register to receive support and resources to empower your family. Our Family & Community Engagement Manager, Samantha Brant (mom to Macy, RTT) will reach out to you right away. We will keep you up to date on the latest research, help you understand Rett syndrome, and provide you with a new parent packet.
“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 Rettsyndrome.org 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
The First 100 Days
This brochure was created for parents of a newly diagnosed child. We know there is a lot of new languages to learn and new systems to navigate. We have created this First 100 Days Pathway to help you know where to begin with this diagnosis and how to prioritize what needs to be done in the first 100 days.
The Rett Syndrome Handbook
This valuable tool included free in your new parent packet, is the encyclopedia on Rett syndrome put together by Rett experts and includes many valuable family stories and testimonies.
Primary 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.