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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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Kevin's story

We started noticing changes in Kevin about four years ago. At first, we put it down to a midlife crisis and shrugged it off. But over time, things began to shift again, he started avoiding work, making up stories that sounded completely real, and talking about things he’d just heard as if they were his own memories, or reminiscing endlessly about the old days. Then one day, Kevin did something s…

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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