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