Our mission

Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder


Latest news

Feb 11, 2020, 5:02 PM
Media release: A unique beer for a sobering problem

Craft beer fans in Wellington and Auckland will have the chance to experience a very special brew for Rare Disease Day at the end of the month.

Jan 26, 2020, 5:59 PM
Media release: Rare Disorders NZ congratulates Kalydeco campaigners

Rare Disorders NZ congratulates campaigners after PHARMAC announced their decision to fund a medicine for people living with cystic fibrosis in New Zealand.

Jan 13, 2020, 6:03 PM
Media release: Fair for Rare NZ to launch at Parliament

A nationwide campaign to raise awareness for the 300,000 New Zealanders living with a rare disorder is to be launched at the Grand Hall in Parliament on Friday 28 February.

Dec 23, 2019, 2:05 PM
Nelson 12-year-old with rare disorder that slowly robs her of movement

Kaitlyn McAlpine is a fearless mountainbiker but her rare condition means she cannot brush her hair. 

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