• 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!

    State 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. Eight sites have 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

Twelve 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.

LA Feast & Fundraiser - Thank You!

Thank you to everyone that had a part in making the LA Feast & Fundraiser Benefiting Rettsyndrome.org such a success! We were blown away by the support, awareness and funds that were raised Saturday night in LA. There is still time to bid on items from the Silent Auction. See the items here

2016 Research Symposium and Family Conference

Join us for the 14th Rettsyndrome.org Rett Syndrome Symposium June 22-24, 2016 and the 32nd Family Conference June 24-26. Both events will take place at Eaglewood Resort and Spa in Itasca, Illinois.  Registration closes June 17th.











Family resources

Local Resources

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

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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]

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Find your Regional Rep


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Signature fundraisers and events


Strollathons are Rettsyndrome.org's signature fundraising events.

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Rett Racers

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

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