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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Proposal to widen access to cystic fibrosis medicines welcomed
22 Jan 2026
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New Zealand first in Southern Hemisphere to host European Rare Diseases Research Alliance Mirror Group
17 Dec 2025
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Major milestone reached for Strategy implementation
24 Nov 2025
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Rare Disorders NZ launches new podcast
22 Oct 2025
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Rare Disorders NZ Chair forced to become another medical refugee
25 Sep 2025
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RDNZ endorses letter to Minister of Health on patient safety
17 Sep 2025
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Calling all Kiwis with a rare health condition – your voice is needed
9 Sep 2025
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RDNZ urges Government to include Rare Disorders Strategy in Pae Ora legislation
19 Aug 2025
Rare Stories
Natalie's story
Natalie is my first much adored grandchild. I visited New Zealand from England for a month when she was a month old, and another month at 10 months old. At this stage, she was crawling all over the house, although she was never able to push off with her legs like other children her age. I then emigrated over here when she was 14 months old, by which time she hardly crawled at all. Her parents ke…
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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