News
The latest updates from RDNZ and the rare disorder community.
Fair for Rare NZ campaign launched at Parliament
Last Friday Rare Disorders NZ launched a campaign calling for the development of a National Rare Disorder Framework.
Rare Disease Day media
Our CE, Lisa Foster, was interviewed four times for Rare Disease Day along with two mums of children living with a rare disease.
Cheers for Rare! Unique beer launched
The Rare Beer, a very special brew, was launched in Wellington last Wednesday.
'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.
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.
National commits to ring-fenced fund
Our CE Lisa Foster and Nicola Swan from SWAN NZ attended the launch of National's Health Discussion document last week.