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
Susannah's story
I was diagnosed with Trigeminal Neuralgia (TN) 11 years ago, at the age of 32. At that time my daughter with special needs was 10 and my younger daughter was almost six. I am a solo mum. My GP diagnosed it immediately but she referred me to the maxillofacial surgeon at the hospital for an expert diagnosis. This was a humiliating experience that resulted in a complaint through the Health and D…
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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