News
The latest updates from RDNZ and the rare disorder community.
Open letter to the Prime Minister on behalf of the rare disorder community
Today we sent an open letter on behalf of the rare disorder community to Jacinda Ardern, as well as other appropriate Ministers.
Rare Disease Day campaign a success
A massive thank you to everyone who supported our organisation during our Rare Disease Day campaign last month.
NZ Voice of Rare Disorders White Paper
In November 2019 RDNZ conducted a survey to highlight the barriers within the current health system for people living with rare disorders.
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.