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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.

IEPs and School Placement: Exploring Perspectives Empowers the Parent

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.

Rettsyndrome.org Talks About Advancing Research

December 15, 2014

Talk about how we choose a research project to fund and what exactly happens behind the scenes to ensure the Research Investments of Rettsyndrome.org are good ones.

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Family resources

Rett Syndrome Handbook

Often called the “Rett Syndrome Bible”, all the information you need for your journey

Download the handbook [PDF - 407MB]

Available at the online store

Family Conference

Find valuable resources from our "Opening Doors to Discoveries" Family Conference. Check back for speaker handouts and recordings.

Learn more

Get 1:1 Support

Connect with our Family Empowerment Team

A parent can provide emotional support and information to you and your family

Learn More

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

Lemonade Stand for Rett

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

Start your own Lemonade Stand

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

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