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 including links to disability support services. We have also added a page for personal stories and other contributions for families to share their experiences.

Latest News

June 30 2020

A Chat with Professor Sir Adrian Bird

With thanks to Rett Syndrome Research Trust for arranging this wonderful interview with Professor Sir Adrian Bird describing his amazing breakthrough discovery of MECP2 and his ongoing scientific research.
February 8 2020

2020 Conference Postponed


After careful consideration of the spread of the new Corona Virus, The Trustees of the RettNZ Trust have decided it would be prudent to wait a year in case the escalating situation becomes a pandemic.
June 26 2019

Inside the Lab : MIT/McGovern Institute

Rett Syndrome Research Trust is hitting the road to bring you an inside look at the critical research taking place in some of the labs they support.
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.

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