Welcome to the website of Rett NZ

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.

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Join us at our forums and share your thoughts, advice and worries. You can find the forums here. For more information about the forums and how to use them, go to this page.

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Do you have any comments or questions about Rett syndrome? Please send us an e-mail at rett.info@nzord.org.nz.

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News & Updates

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Conference 2014: Education Seminar

It has been encouraging to see the numbers of teachers and teacher-aides attending. These dedicated people play such an important role in the development and education of our girls and undoubtedly have many ideas, knowledge and skills they could share with us.

Therefore and continuing the theme of education we would like to include a session at next years conference based around these wonderful people sharing these attributes for the benefit of all of us. Of course your own ideas, knowledge and skills should also be shared; lets un-tap this expansive knowledge base.

Helene Philpott who for 8 years, before retiring in December 2012, taught Jacinta Hall-Laing at St Joseph’s School in Upper Hutt has agreed to facilitate the session. We would like her to be joined on the panel by 2-3 others. As we approach the conference and you become aware of the attendance of your own teachers/teacher/aides please encourage then to consider being a part of this panel; Helene will contact them and co-ordinate matters.

We believe there will be many great ideas out there which we can all look to build into furthering the education of our girls; please keep this in mind and look to share those ideas, knowledge and skills.

Conference 2014

Please keep these days free: May 16–18, 2014 at Novatel Ellerslie Auckland.

Due to popular demand the Inspirational Susan Norwell has agreed to come back to update us on the very latest communication techniques for Rett Girls.

More news on the other speakers soon.

New Zealand initiative being trialled with Rett girls in Houston

Neuren completes NNZ 2566 oral phase I  safety study and files IND for Rett syndrome (pdf file)

NNZ-2566 was developed from a drug discovered by Prof Margaret Brimble at Auckland University. It has been used for the rehabilitation of soldiers returning with traumatic head injury from the war in Afghanistan. The trials on mice were encouraging so now it is going to be trialled on girls over eighteen years of age in Houston. The drug is also going to be trialled with those who have Fragile X soon.

Treating Synaptic Dysfunction

An interesting article on the Rett Syndrome Research Trust Blog:

Treating Synaptic Dysfunction

Girls With Rett Syndrome Find Their "Voice" In Eye-Gaze Technology

Cognitive Abilities of Rett Syndrome Patients have been Underestimated for Decades

A study has found that Rett syndrome is often confused with autism and needs better assessment.

Read more

Breaking news

Research has found that a bone-marrow transplant can treat mice with a version of Rett syndrome:

Read the announcement

Conference dates

Note that the dates for the 2012 conference are 11–13 May, not 12–14 May as previously reported.

The conference will be in Auckland and will feature

  • Susan Norwell is to return with latest communication ideas
  • Specialists to answer your questions
  • Setting up a trust for your child

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