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Raising the rare voice

We are the respected voice for rare disorders in New Zealand.  We advocate for access to world class and world leading health, disability, education and other services for the 300,000 New Zealanders living with a rare disorder. 

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Elenna's story

My name is Elenna Kathleen McKinstry. I am nearly two years old (end of May). I have an older brother named Alaric; he will be four in October. I was born only slightly small, at 6 lb 5 oz, but doctors were worried because they don't like it when a mother has gestational diabetes and a small baby. I spent my first week in the Special Care Baby Unit at Hutt Hospital with Mum staying with me and G…

Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.

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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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