We have invested $35 million to find effective treatments and a cure for Rett.
February 18, 2015
This week’s news that Neuren Pharmaceuticals has been granted Orphan Drug Status by the FDA for NNZ-2566, now known as Trofinetide, is good news for families who live with Rett Syndrome.
February 11, 2015
We are living in an exciting and hopeful time - “the time of Rett” - where finding a treatment and a cure for Rett is truly possible.
December 17, 2014
An Individualized Education Plan is HUGE! The IEP dictates our life at the school, and will influence your child's life after high school. But . . . you probably already know how HUGE an IEP is.
December 15, 2014
An in-depth discussion of how we decide which research to fund, and how we ensure our research choices are good ones.
See all news
Often called the “Rett Syndrome Bible”, all the information you need for your journey
Download the handbook [PDF - 407MB]
Purchase a hard copy
“Reach for Your Star” 2015 Virtual Family Conference is June 22-26
October Orlando Family Getaway - October 2-5, 2015
More conference information
Connect with our Family Empowerment Team, join a special interest network
More forms of support
Connect with a parent volunteer to learn about the resources in your area.
Find your representative
Strollathons are Rettsyndrome.org's signature fundraising events.
Rett Racers is one of Rettsyndrome.org's signature fundraising programs.
The Lemonade STAND for Rett fundraiser is perfect for anyone new to fundraising.
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4600 Devitt Drive Cincinnati, OH 45246
EIN 31-1682518 CFC 11046
Mail checks to:
P.O. Box 706143, Cincinnati, OH 45270-6143
Rettsyndrome.org is a 501c(3) non-profit corporation registered as the International Rett Syndrome Foundation