IRSF Resource Library

Developed in collaboration with Rett syndrome experts throughout the U.S., the Rett Syndrome: Comprehensive Care Guidelines are intended to be used to support a meaningful partnership between caregivers and the physicians, nurses, and therapists who are involved in the care of your loved one with Rett syndrome. This is a medical resource, intended for families to share with their providers, to ensure their loved one is receiving care that is recommended by leading Rett syndrome experts.IRSF would like to express gratitude to the 18 Rett syndrome Centers of Excellence and experts that volunteered time and effort to develop this list of recommendations.

IRSF’s Rett Syndrome Transition of Care Toolkit is designed to empower parents and guide healthcare providers through the conversations necessary to transition a loved one to adult medical care. Every journey to adulthood is different, but with this Toolkit, families can face the challenges of aging with Rett head-on thanks to the insights and learnings of Rett caregivers who have been there before.The TOC Toolkit was developed by IRSF in collaboration with the Child Neurology Foundation as part of the ACP HVC pediatric to adult care transition project.