• 2016 Rettsyndrome.org Family Survey

    Complete the survey to let your voice be heard!

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  • 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 Rettsyndrome.org Family Survey

Rettsyndrome.org and the Family Empowerment Board are currently conducting a survey to let your voice be heard! Please take 10-15 minutes to complete the 2016 Rettsyndrome.org Family Survey.  We want to know what is most important to you and learn how you feel Rettsyndrome.org can improve in our mission.

 

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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

 

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

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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.

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