October 28, 2014

NIH’s ORDR-NCATS RDCRN and NICHD Awards a U54 Cooperative Agreement for Natural History Study

Research Consortium for Rett Syndrome, MECP2 Duplications Disorder, CDKL5 Disorder and FOXG1 Syndrome.

October 8, 2014

Treatment of Rett Syndrome With Recombinant Human IGF-1 (Mecasermin [rDNA]Injection)

INCRELEX® (mecasermin [rDNA origin] injection) is indicated for the treatment of growth failure in children with severe primary IGF-1 deficiency, or with growth hormone (GH) gene deletion...

September 29, 2014

Building programs to maximize our girls’ abilities (Neuro-Habilitation)

We’ve just announced some of the exciting studies in a brand new research area here at, and we wanted to take a moment to discuss what the program is and what aims to achieve.


Upcoming events

Coconut Creek Strollathon (FL)
Sat, 01 Nov 2014
All Day Event

The Woodlands Strollathon (TX)
Sat, 01 Nov 2014
All Day Event

Epilepsy Awareness Day (CA)Event spans multiple days
Wed, 05 Nov 2014 -
Thu, 06 Nov 2014

All Day Event

2nd Annual Meals for Maddie
Wed, 12 Nov 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

Rett Angels Golf Tournament

Join us on Friday, October 3rd, 2014 for our annual tournament in honor of those with Rett syndrome.

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

Hannah's Hope for a Cure 5k

Join us October 25, 2014 for a 5k walk/run to help raise money to find a cure for Rett syndrome. Sponsor or register for the Kids Race or the 5K Walk/Run at Fort Mason Park - 1015 San Antonio Street, Mason, TX.

Learn more


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