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.

News Flash!

Photo: Dean Carruthers

Distinguished Professor Margaret Anne Brimble has been made a Dame Companion of the New Zealand Order of Merit for services to science.
Link: Best of NZ: New Year Honours 2019

Latest News

July 12 2018


Two of our Rett Families were filmed by ATTITUDE for TV ONE's Sunday morning programme. Thank you so much from fellow parents for sharing your joys and your trials on the Rett Journey.
May 11 2018

Margaret Brimble becomes first-ever Royal Society fellow

Professor Margaret Brimble joins the likes of Sir Ernest Rutherford and Sir Paul Callaghan and 40 other New Zealanders, up to now all men, in becoming a fellow of the Royal Society in London.
March 24 2017

Success of second clincial trial with Trofinetide

The Rettsyndrome.org and Neuren released the details of their second clinical trial using Trofinetide.
March 20 2017

The Diagnosis we all went through

An interesting article we can all relate to about receiving a diagnosis.
We have four new families who have joined us so they will be experiencing these feelings.
We are thinking of them all and the journey they are on to learn about unconditional love

An award presented to Distinguished Professor Margaret Brimble from the parents of Rett children.

"For your expert knowledge and years of personal and professional service to Rett in New Zealand. Thank you for your caring and commitment to helping Rett children, adults and their families."

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.

A visit to the Brimble Lab to see where Trofinetide (NNZ-2566) was discovered

Margaret Brimble Trofinetide NNZ-2566

Distinguished Professor Margaret Brimble of the University of Auckland has given two lectures at the Rett NZ Conferences.

In May 2016 Professor Brimble invited our Rett NZ Trust Chairman Dugald MacBrayne and Rett NZ Coordinator Gillian Deane to visit her laboratory to see how the drug NNZ-2566 or Trofinetide was discovered and to meet the staff members who helped with its discovery. There are no current approved medicines for the treatment of Rett Syndrome.

Read more about Margaret Brimble and Trofinetide (NNZ-2566)

2017 Research Awards

Rett Syndrome Research Trust Awards $6.2 Million in 2017 to Speed a Cure for Rett Syndrome.

Press Release

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