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Raising the rare voice

We are the respected voice for rare disorders in New Zealand.  We advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition. 

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Rare Stories

Jessica's story

Jessica was born by elective Caesarean section in February 2011. Everything went to plan except she started having breathing issues a few minutes after she was born. The obstetrician suspected fluid on her lungs so called the registrar back and she was promptly sent to the special care unit. It wasn’t until late that night that the night shift nurse realised she had a large bilateral cleft of th…

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 160 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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