Register with us to get support from our network of families and professionals.
Register for support
Join our community to receive updates from the foundation.
The Rett-002 study is now open for enrollment. The University of Alabama at Birmingham, AL, Boston Children's Hospital, MA, Baylor College of Medicine, TX, Greenwood Genetic Center, SC and Rush University Medical Center, IL have all been initiated and are now recruiting. For more information about the trial, study locations and how to register your interest visit www.rettstudy.com.
Nine clinic sites of the fourteen are now enrolling and conducting study visits. We encourage you to contact the clinic site that you’re interested in enrolling with. Visit our website for more information about this important study.
Newron Pharmaceutical has announced that their Investigational New Drug (IND) application for sarizotan has been approved. Sarizotan has shown to reduce the number of episodes of apnea in mice models of Rett syndrome. Read more.
Join us for the First Annual LA Feast & Fundraiser on Saturday, June 11th from 6:00 - 10:00PM. The event will take place at Cafe Pinot and Maguire Gardens in LA. Register today or if you can't attend consider sponsoring the event.
See all news
What's in your state? Local and national parent-approved resources for Rett families.
Find your state
See national resources
Often called the “Rett Syndrome Bible”, all the information you need for your journey
Download the handbook [PDF - 407MB]
Purchase a hard copy
Connect with our Family Empowerment Team, join a special interest network
More forms of support
Connect with a parent volunteer to learn about the resources in your area.
Find your representative
Strollathons are Rettsyndrome.org's signature fundraising events.
Rett Racers is one of Rettsyndrome.org's signature fundraising programs.
There are many ways to get involved and host a fundraising event to benefit Rettsyndrome.org.
4600 Devitt Drive Cincinnati, OH 45246
EIN 31-1682518 CFC 11046
Mail checks to:
P.O. Box 706143, Cincinnati, OH 45270-6143
Rettsyndrome.org is a 501c(3) non-profit corporation registered as the International Rett Syndrome Foundation