June 2, 2014

Welcome to

It’s the beginning of a new era for the Rett syndrome community. The International Rett Syndrome Foundation isn’t going away; we’re evolving into a more focused comprehensive research and family empowerment organization doing business as

April 17, 2014

A Human Clinical Trial Study on NNZ-2566

NNZ-2566 is a medication being developed by the small pharma company Neuren. Neuren is a New Zealand company with special interests in areas of neuroscience where there are gaps in treatment development.

February 28, 2014

Cure Rett and IRSF Announce New Partnership

For Immediate Release. Cure Rett and the International Rett Syndrome Foundation (IRSF) are thrilled to announce today that they have entered into a partnership.


Upcoming events

New Jersey Golf
Fri, 25 Jul 2014
All Day Event

11th Annual Spike Rett Fundraiser (WI)Event spans multiple days
Fri, 01 Aug 2014 -
Sat, 02 Aug 2014

All Day Event

2nd Annual Lil’ Bit of Fun Golf Tournament
Sat, 02 Aug 2014
All Day Event

You may have seen my story...

But even if not, I think it will sound familiar.

I'm Norah, I am five years old and I have Rett syndrome. My body and hands don’t listen to me and I cannot talk. But I am smart and understand you.

My friends are raising funds to help develop a miracle drug for those like me living with Rett syndrome.

Video created by parents, Megan and Josh Lowe.

Make a Gift


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


Strollathons are's signature fundraising events.


Rett Racers

Rett Racers is one of's signature fundraising programs.


Lemonade Stand for Rett

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

Start your own Lemonade Stand

Featured events

Casting 4 A Cure

Don't miss the Casting 4 A Cure event August 21-24, 2014 in Victor, Idaho. The annual fundraiser began when Bill and Beth Farnum combined two of their passions, fly fishing and fundraising, to help their daughter, Ella, live a life up to her full potential.

Event information

Picture A Cure 2014

Join us at The Woodlands Waterway Marriott (TX) on July 12, 2014 featuring country superstar Collin Raye.

Event registration

October Awareness Month

October is our time to make a difference! As the leading cause of severe impairment in girls, it occurs worldwide in 1 out of every 10,000 female births, yet many still have never heard of it; Help us change this.

Learn more


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