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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RDNZ Briefing to new Health Minister
3 Feb 2025
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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
Rare Stories
Gabrielle's story
Gabrielle was diagnosed with dyskeratosis congenita (DC) in November 2014, at the age of four. Her parents had noticed she bruised easily, took a long time to recover from illness and her skin was yellowish. After initially suspecting leukemia, weeks of blood and bone marrow testing led to a diagnosis of DC. DC can affect virtually any organ in the body, but primarily organs that need continu…
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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