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

    More information: Registration closes June 17th

    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.

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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, 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.

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.

Newron Pharmaceutical Announces Progress with Sarizotan

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.

First Annual LA Feast & Fundraiser - June 11th - Register Today

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.











Family resources

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

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Rett Syndrome Handbook

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

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Rett Racers

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