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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Advancing rare disorders research connections
19 Jun 2025
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'Don't forget rare' - RDNZ writes to Minister Seymour
16 Jun 2025
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Leaving no-one behind: a RDNZ - Costello Medical collaboration
31 May 2025
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Rare resolution adopted by World Health Assembly
25 May 2025
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RDNZ-led high level roundtable discusses diagnosis and medicine access
15 May 2025
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Rare Disorders Month 2025 in pictures
28 Apr 2025
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Congratulations to winners of essay competition
23 Apr 2025
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Laying the foundations of an Aotearoa New Zealand rare disorders research strategy
28 Mar 2025
Rare Stories
Philippa's story
My mother and I both have rare diseases and have vastly different experiences in dealing with the health system. I was diagnosed with Hydrocephalus in the early 1970s thanks to an observant Plunket nurse. My sister was also diagnosed with Hydrocephlus at birth three years later. My parents were told not to have any more children, and there wasn't any advice or assistance available, so they just g…
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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