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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RDNZ seeks clarification on new attendance rules
7 Oct 2024
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Biennial Support Group Lead Hui
16 Aug 2024
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Rare disorder community celebrates Aotearoa’s first Rare Disorders Strategy
25 Jul 2024
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RDNZ invited to release of Letter of Expectation to Pharmac
22 Jul 2024
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Patient advocates meet with Labour to discuss medicine access
21 Jul 2024
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Briefing on medicine access issues for rare sent to new Pharmac Chair
19 Jul 2024
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Rare disorder patients desperate to know if their medicines will be funded in new Pharmac budget allocation
25 Jun 2024
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Call for Expressions of Interest in new Rare Disorders Research Network Development Group
18 Jun 2024
Rare Stories
Ellie's story
I am Ellie, I have IPH (Idiopathic Pumlonary Hemosiderosis). IPH is the unknown bleeding of the lungs. When I have a flare up, I cough up blood and find it difficult to breathe. I was diagnosed when I was 12. Growing up I had chest infections, pneumonia, coughing up blood and aneamia. After spending 3 weeks at Starship and having a lung biopsy my Doctors gave me my diagnosis. I take prednisone …
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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