For Families

Welcome to  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!






Dear Family Member,

You have reached the right place for help and support on your journey caring for your loved one with Rett syndrome. is an organization comprised of parents and friends of those diagnosed with Rett syndrome and is dedicated to providing you with the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. We are committed to making a positive difference in the lives of all touched by this disorder. The founders, trustees, staff, and volunteers passionately believethat research will deliver the treatments and cure we long for.

Though Rett syndrome remains fairly unknown to the general public, it is a high-profile disorder in scientific circles. Find hope and encouragement with the knowledge that hundreds of scientists around the world are focused on Rett syndrome and are making remarkable progress.

If you are newly diagnosed, please begin by clicking HERE to register with us.   We have many resources for families- from state and regional resources to international resources.  We also know the importance of helping you connect to others in a way that is meaningful to you.  Explore our Connect with Others menu to find everything from social media groups to a fellow parent near you who can help you on your journey.  And last but not least, we encourage you to have a little fun!  Our Just for Fun menu can help you raise awareness for your child, find products you may want to try and even create a beautiful social media profile picture. is only as strong as the families and friends who support us. When you are ready to be more involved with our foundation to advocate for your child and all others touched by Rett syndrome, contact us at 1-800-818-7388(RETT). We are here to help, and we understand.