Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Time is of the essence for a Nelson man with a rare genetic condition that causes his tissue to turn to bone.
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.
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.
Rare Disorders NZ congratulates campaigners after PHARMAC announced their decision to fund a medicine for people living with cystic fibrosis in New Zealand.