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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Te Whatu Ora reset standing in the way of people with rare disorders getting the care they need
24 Oct 2024
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Pharmac’s early call for applications for rare disorder medicines welcomed
22 Oct 2024
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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
Rare Stories
Roger's story
I have a rare disorder called Radioulna Synostosis. None of my family have this disorder and I have had it since birth. Radioulna Synostosis is a rare condition where there is an abnormal connection between the radius and ulna bones of the forearm. It was first described in 1793 and since then there have been just over 400 cases reported. Around 60% of people with Radioulna Synostosis have bo…
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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