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
Sam's story
Hi there, I’m Sam. I’m 27 and I got diagnosed with Klinefelter Syndrome age 23, but those 23 years of not knowing were somewhat uncomfortable. I felt like I was very misunderstood as a child, into my teen years and early adulthood. Klinefelter Syndrome is a genetic condition that results when a boy is born with an extra copy of the X chromosome. Klinefelter Syndrome is a genetic cond…
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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