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

November 4 2015

Studying the X Chromosome

Very interesting research on the X chromosome
November 4 2015


Understanding the process of the MeP2 mutation helps us to understand the various other organs of the body which are affected in Rett.
November 4 2015

An article by the clever ProfZoghbi who discovered the MeCP2 link to Rett

Further study of the gene is showing how complex it is and may explain the gradual onset of the condition.
July 16 2015

Interesting trends in early diagnosis for Rett in Australian

An interesting article following the patterns of the age of diagnosis of Rett Syndrome in Australia.
July 16 2015

summer time with International Rett Research

RSRT recently awarded $530,000 to Neurolixis, a small biotech firm in southern California that is developing the drug, NLX-101, to treat breathing abnormalities in people affected by Rett Syndrome. The drug targets a specific serotonin receptor (5-HT1A) located in regions of the brain that affect respiration, mood and cognition. It's possible that, beyond breathing, the drug may also improve other core symptoms such as anxiety and movement disorders
July 16 2015

New York Times Article on Gut Microbiomes and Rett

WE know Rett girls have problems with food processing and constipation. There are a number of labs working on alleviating these symptoms by understanding them better.
March 9 2015

News about NNZ2566

We have been reading about the FDA decision on NNZ2566.
Here is some expert advice from the International organisation
March 9 2015

MY daughter is a different kind of perfect

A Mother's tribute to her daughter