Ways to Connect with Others

Welcome to Rettsyndrome.org.  We are glad you found us.  You have come to the right place for trusted information, family support, an exciting and solid research program and most importantly you have found HOPE!

You are not alone. Support comes in many different ways at Rettsyndrome.org. Select which ones best meet your needs.

1:1 Education and Support

Connect with our Family Empowerment team to get the individualized attention from parents just like you who are committed to providing support throughout this journey.

Register here


Join a Special Interest Network

These networks are primarily email based communities or Facebook groups that cater to the unique needs of a variety of individuals who love and care for someone with Rett syndrome. 

Educators Network
Grandparents Network
Dads Network
Single Parents Network
Life After Rett Network


Join a Parent Email Listserv - The RettNet

The Rettnet is provided at no charge by Rettsyndrome.org to encourage a free exchange of information on various aspects of Rett syndrome awareness, care, research, treatment and support.  Thank you for keeping the topics Rett-related, and for keeping this an open and supportive environment for all participants.

RettNet Listserv


Community Resources

Navigating the rich resources available to help your child and your family can feel overwhelming. That is why we have compiled a list of resources available by state as well as resources that are common for all. Our goal is to be comprehensive, not intimidating. Please contact Rettsyndrome.org if you need help filtering this information. We are here to help.

National Resources  l  State Resources