Our mission
Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Latest news
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.
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.
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.
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.