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Raising the rare voice

We are the collective 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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Isobel’s story

Only now, at the age of 34, Isobel (Issie) has a diagnosis. It’s called Glass Satb2 Syndrome and perfectly describes Issie : severe intellectual disability, complete lack of speech, sleeping problems and the list goes on. Her blood was sent to a laboratory in Finland for whole genome sequencing, resulting in this syndrome which I’d never heard of. There seem to be only 700 confirmed cases inte…

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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