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 GroupJoin us at our Facebook Group and share your thoughts, advice and worries.
Send us an e-mailDo you have any comments or questions about Rett syndrome? Please send us an e-mail at firstname.lastname@example.org.
A visit to the Brimble Lab to see where Trofinetide (NNZ-2566) was discovered
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.
Look who supports Rett Syndrome
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."
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.
TV ONE - ATTITUDE
Margaret Brimble becomes first-ever Royal Society fellow
Success of second clincial trial with Trofinetide
The Diagnosis we all went through
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
Rett Annual Report to March 31, 2016
Sometimes it seems their bodies have fought so bravely they just become too tired.