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.
Rare News
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Health NZ execs grilled by MPs on Strategy implementation
6 Dec 2024
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Connecting rare disorders researchers through new network
29 Nov 2024
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Calling for nominations for RDNZ 25th anniversary awards
27 Nov 2024
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RDNZ discusses new attendance rules with officials
19 Nov 2024
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Inaugural Clinical Advisory Panel announced
15 Nov 2024
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Te Whatu Ora reset standing in the way of people with rare disorders getting the care they need
24 Oct 2024
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Pharmac’s early call for applications for rare disorder medicines welcomed
22 Oct 2024
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RDNZ seeks clarification on new attendance rules
7 Oct 2024
Rare Stories
Luca's story
Luca was born 13 weeks premature, weighing just 810 grams and suffering 24 different medical complications. He has chronic lung disease, which meant he needed to breathe through a tracheostomy tube in his throat, and global developmental delay. He's also had a colostomy bag because of problems digesting food. It's so hard to believe now how small he was and what he's been through. Luca has sp…
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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