• Unity, Strength and Hope – 2016 Family Conference and Research Symposium

    More information:

    Research Symposium Family Conference
  • Trofinetide Trial Rett-002 Now Enrolling

    The Neuren Rett-002 study is now open for enrollment! For more information visit the links below.

    Rettsyndrome.org Blog Rett-002 Study Website
  • What’s in Your State?

    For Families: Find Rett syndrome related resources in your state!

    Family Resources
  • Rettsyndrome.org is the world's leading Rett syndrome research funding organization

    We have invested $38 million to find effective treatments and a cure for Rett.

    Our impact Research opportunities Research awards
  • Our research will help millions

    A cure for Rett will yield major advances toward treatments for millions of people around the world with Autism, Parkinson's, Alzheimers, Schizophrenia and Traumatic Brain Injuries.

    Make a gift online
 

Newly Diagnosed?

Register with us to get support from our network of families and professionals.

 

Register for support

 

Join RettSyndrome.org

Join our community to receive updates from the foundation.

 

Sign up

 

Now Enrolling: Trofinetide Trial Rett-002

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 and Greenwood Genetic Center, SC  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.

Updates from the Rett Consortium Natural History Study

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.

Our Research Approach: An update from our Chief Science Officer

In 2015, tremendous progress was made in our efforts to advance Rett syndrome research. This year holds even more promise for Rett syndrome as Rettsyndrome.org continues to fund research programs.

First Annual LA Feast & Fundraiser - June 11th

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 early or if you can't attend consider sponsoring the event.

 

Donate

DONATE

TO ADVANCE RESEARCH

Pledge

GET SUPPORT

FROM A PEER

Participate

PARTICIPATE

IN YOUR AREA
 
 

Family resources

Local Resources

What's in your state? Local and national parent-approved resources for Rett families.

Find your state

See national resources

Rett Syndrome Handbook

Often called the “Rett Syndrome Bible”, all the information you need for your journey

Download the handbook [PDF - 407MB]

Purchase a hard copy

Find your Regional Rep

 

Connect with a parent volunteer to learn about the resources in your area.

Find your representative

Signature fundraisers and events

Strollathon

Strollathons are Rettsyndrome.org's signature fundraising events.

Visit Strollathon.org

Rett Racers

Rett Racers is one of Rettsyndrome.org's signature fundraising programs.

Visit RettRacers.org

Plan a Fundraiser

There are many ways to get involved and host a fundraising event to benefit Rettsyndrome.org.

Start your own fundraising event.

Rettsyndrome.org is a 501c(3) non-profit corporation registered as the International Rett Syndrome Foundation

© International Rett Syndrome Foundation | Privacy policy | Legal Terms & Conditions | Email preferences