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
Shirley's story
I am 78 years old and have suffered from Primary Lymphoedema most of my life which is caused by an insufficient lymph system. In contrast, Secondary Lymphoedema is the result of operations or accidents and only affects the area of the blockage or damage. None None None None
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.
Browse all storiesConnect with us
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