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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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Jarod's story

Jarod was born on the 4th of July 2008. He was a healthy weight of 9 pounds 14 ounces. He seemed like a perfectly healthy newborn, other than his urine was bright orange (we think it was due to his renal dilation he was originally diagnosed with before birth). However, he didn't pass very much meconium. We went home the day of his birth, and he slept all day. I assumed this was normal. He did…

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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