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

 

Latest news

Feb 17, 2020, 3:20 PM
'No choice but to keep going': Kiwi struggles to get help as his tissue turns to bone

Time is of the essence for a Nelson man with a rare genetic condition that causes his tissue to turn to bone.

Feb 13, 2020, 12:24 PM
Media release: Join us this Rare Disease Day to help those with a rare disorder

A nationwide campaign to raise awareness and money for the 300,000 New Zealanders living with a rare disorder was launched last month by Rare Disorders NZ.

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.

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