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.

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

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."

News Flash!

Distinguished Professor Margaret Brimble has been made a Fellow of the Royal Society in London. RettNZ watches with great interest as the Trifonetide trails are looking for patients going into the third stage of testing Margaret’s drug.

Our congratulations for a second award in the field of cancer research.

Rett website has copies of Margaret’s lectures to our conference.

We will all be thinking of Margaret on Friday 13 July as she signs the book that Newton and Einstein signed!

Christine and Dugald MacBrayne make a point of taking their daughter Mandy everywhere with them. Mady, 36, has Rett syndrome and Dugald says the condition is by its nature isolating because of the inability to communicate.

IHC Community Moves April 2018 on the IHC Foundation help for Rett NZ and other similar organisations.

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
September 18 2016

Rett Annual Report to March 31, 2016

We were so sad that Z'juska Beaudine became a Rett Angel as she had been part of our Rett family for so long. The photos of her 21 birthday were so beautiful and we could see how she was loving being all dressed up for the occasion.
Sometimes it seems their bodies have fought so bravely they just become too tired.
September 18 2016

Towards a Clinical Network

Dr Rosemary Marks & Dr Haemish Crawford suggest further development of assessment of our girls and women at the 2018 meeting.
September 3 2016

Fascinating tweet from Canadian Rett

A few families have this rare gene which throws information on the Huntington gene
August 22 2016

NNZ-2566 in Rett Syndrome

For those of us who trawl the websites trying to understand where the clinical trials are and the age groups of the present ones, this is very useful.