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 discusses new attendance rules with officials
19 Nov 2024
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Inaugural Clinical Advisory Panel announced
15 Nov 2024
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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
Rare Stories
Ava's story
My daughter was diagnosed with 1p36 deletion syndrome just after she turned 2. Deep down I always knew she was a little different, she didn’t make a sound when she was born and she cried for the first time at 3 months old. She wouldn’t really interact or look at us directly and at 4 months we got a referral to see an optometrist. None None She surprises us every day. She has an …
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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