Rettsyndrome.org's 2014 Impact Report [PDF-2MB]

July 27, 2015

Take a look at our 2014 Impact Report that highlights our accomplishments in research, fundraising and family empowerment.

New Discovery About the X Chromosome

July 1, 2015

A critical paper regarding the X chromosome was published this week in Sciencexpress (June 18, 2015 pages 1-19) that will have a direct bearing on Rett syndrome in the foreseeable future.

Neuren and the Orphan Drug Status: An Overview

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.

Accelerating Research: The Time of Rett

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.

Donate

DONATE

TO ADVANCE RESEARCH

Pledge

GET SUPPORT

FROM A PEER

Participate

PARTICIPATE

IN YOUR AREA
 

Family 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

Family Conferences

“Reach for Your Star” 2015 Virtual Family Conference is June 22-26

October Orlando Family Getaway - October 2-5, 2015

More conference information

Find your Regional Rep

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

Find your representative

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

Lemonade Stand for Rett

The Lemonade STAND for Rett fundraiser is perfect for anyone new to fundraising.

Start your own Lemonade Stand

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Rettsyndrome.org is a 501c(3) non-profit corporation registered as the International Rett Syndrome Foundation

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