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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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Susan's story

In 2012, my brother Andrew became very unwell. Slowly over time he had several vague ailments that individually did not set off any alarm bells. Unfortunately, he passed away and we were left without any answers. His postmortem showed a myriad of anomalies that could not be clearly explained. Within six months we had news from the UK that one of our cousins had just been diagnosed with Hereditary…

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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