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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Celebrating outstanding achievements on Rare Disease Day
28 Feb 2025
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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
Rare Stories
Rachael's story
I was diagnosed on my 29th birthday, this was a very late diagnosis and why things have become so severe for me. Unfortunately I suffered from Anorexia Nervosa from the age of 16 to 24, so this covered up vital signs of my Ehlers Danlos Syndrome. When I finally fully recovered from my mental illness, I had one year of freedom, and then it began. Starting with poor circulation, to osteoporosis, s…
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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