• October is Rett Syndrome Awareness Month

    Rettsyndrome.org is excited to provide you with tools that you can utilize to help drive awareness for Rett and help us accelerate research and empower families.

    Get Resources!
  • 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.

    Make a gift online

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Now Enrolling: Trofinetide Trial Rett-002

The Rett-002 study is now open for enrollment. All twelve 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

All clinic sites are now enrolling and conducting study visits. We encourage every family to contact a clinic site directly to enroll. 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

Raising a Hand for a Cause with These Two Texan Dads

Rettsyndrome.org would like to send a huge thank you to Dave Clements and Kevin Black for all they have done to promote awareness and bring in donations to support our cause! They recently shared their story on Waking Up in America!   Follow their story on Facebook, and click here to purchase your copy of Raising a Hand for Rett!











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 State Rep


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

Find your representative

Signature fundraisers and events


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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