Welcome to the Website of Rett New Zealand

This website provides information and support for families affected by Rett syndrome.

You will find here information about Rett New Zealand, a brief description of Rett syndrome, links to current research and links to other useful sites. We have also added a page for personal stories and other contributions for families to share their experiences.

Facebook Group

Join us at our Facebook Group and share your thoughts, advice and worries.

Send us an e-mail

Do you have any comments or questions about Rett syndrome? Please send us an e-mail at rett.info@nzord.org.nz.

2014 Rett New Zealand Conference

Out and about at the 2014 conference at Ellerslie, Auckland.

Look who supports Rett Syndrome

Julia Roberts became committed to helping find a cure for Rett Syndrome after meeting Abigail Brodsky, a young girl battling the disease. Julia appeared in the Discovery Channel's Silent Angels: The Rett Syndrome Story and testified before Congress about the need for more research on the crippling neurological disease.
Rose Hill Designs: Believe in a Cure
Illustration by Heather Stillufsen

Latest News

June 23 2014

Rett syndrome drug shows promise in clinical trial

A small clinical trial has found that a growth factor known as IGF1 can help treat some symptoms of the disease. Children who received the drug for four weeks showed improvements in mood and anxiety, as well as easier breathing, in a trial led by researchers at Boston Children's Hospital.
May 20 2014

Conference 2014: Report

This year we had four outstanding speakers who inspired and challenged us. The Education Seminar and Workshop enabled us to discuss age-related challenges.
May 20 2014

NZ scientist at forefront of Rett research

Conference 2014 was inspired by award-winning Distinguished Professor Margaret Brimble from the University of Auckland who told us about her discovery of NNZ2566 which is being trialled in Houston.
October 23 2013

An extensive article about Rett syndrome on the Medscape website

Rett syndrome (RS) is a neurodevelopmental disorder that occurs almost exclusively in females and has a typically degenerative course. It is related to various mutations on the MECP2 gene, which codes for methyl-CpG binding protein-2 (MECP2). Recent studies suggest that MECP2 is expressed in neurons and glial cells and that it will someday be possible to reverse the disorder even after birth when behavioural symptoms occur.
June 24 2013

Living with Rett Syndrome: Eye gaze is a game-changer

For the uninitiated, eye gaze is exactly the same as a touch screen computer, with the minor exception that instead of touching the images on the screen, you look at them. It's astonishing.
April 23 2013

Curing Rett Syndrome: How Do We Get There?

A video presentation taped on April 23, 2013 in NYC. Monica Coenraads, Executive Director of the Rett Syndrome Research Trust, discusses the various approaches that are being pursued to treat and cure Rett Syndrome.
November 22 2012

New Zealand initiative being trialled with Rett girls in Houston

NNZ-2566 was developed from a drug discovered by Prof Margaret Brimble at Auckland University. It has been used for the rehabilitation of soldiers returning with traumatic head injury from the war in Afghanistan. The trials on mice were encouraging so now it is going to be trialled on girls over eighteen years of age in Houston.
March 8 2012

Partial rescue of Rett syndrome by polyunsaturated fatty acids (PUFAs) oil

Evidence of enhanced oxidative stress (O.S.) and lipid peroxidation has been reported in patients with Rett syndrome.