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

September 7 2014

A new clinical trial increased head circumference but did not lessen symptoms

An Italian trial showing some hope but not lessening the symptoms.
September 7 2014

Ipad apps for our girls

IPAD APPS recommended by Rett Parents
September 7 2014

Language Through Motor Planning

Interesting site with ideas for Motor Planning for non verbal children
September 5 2014

Music Therapy

The advantages of Music Therapy from the Music Therapy Centre of California. This article would be helpful for parents and teachers.
September 5 2014

Ideas for Music Therapy

Graphic with five practical steps for Rett music therapy
September 3 2014

Mayo Clinic - Treatment Suggestions for Rett Syndrome

While Rett syndrome has no cure, research suggests that intervention begun soon after the diagnosis offers the greatest chance of producing a positive impact on skills in later years. The earlier treatment starts, the better the possibility for learning as well as managing other problems developed by individuals with Rett syndrome.
September 3 2014

A Plain English Guide to NNZ-2566 Rett Syndrome Research

Grace Forrett's Mother writes a blog about Grace and rett Syndrome. Here is a nice lay person's summary of some of the exciting research which is in progress and trialing of the drug NNz-2566. Her blog summarizes the research.

September 3 2014

An excellent report from Australia on our Rett NZ 2014 Conference

Rett New Zealand hosted their bi-annual family conference in Auckland between 16-18 May 2014. It was entitled the "Rett University Conference" given the highly interesting array of topics and top quality professional speakers. This full report on the conference was sent to us by Phil Cresswell who was our guest from Australia.