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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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Stephen's story

I have MSA-C, a rare neurological condition that came on in my early 60s, primarily caused in my case by the shrinking of my cerebellum, although there is a more common form (but still rare, 1-3 in 100,000 people) which looks a bit like Parkinson’s Disease. MSA stands for Multiple Systems Atrophy as, like many neurological conditions, it is degenerative (in my case the cerebellum, which control…

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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