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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Advancing rare disorders research connections
19 Jun 2025
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'Don't forget rare' - RDNZ writes to Minister Seymour
16 Jun 2025
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Leaving no-one behind: a RDNZ - Costello Medical collaboration
31 May 2025
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Rare resolution adopted by World Health Assembly
25 May 2025
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RDNZ-led high level roundtable discusses diagnosis and medicine access
15 May 2025
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Rare Disorders Month 2025 in pictures
28 Apr 2025
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Congratulations to winners of essay competition
23 Apr 2025
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Laying the foundations of an Aotearoa New Zealand rare disorders research strategy
28 Mar 2025
Rare Stories
Preston's story
Preston was born in September 2012. At 3 weeks old a Paediatrician found he had a VSD (Ventricular Septal Defect) or heart murmur. An ultrasound showed a 3mm hole between ventricles. It was monitored & over time it closed by itself. He was a very happy and healthy baby but was slow to meet milestones. Crawling came at 14 months and walking unassisted at two years old. When he could sit, he would…
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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