News
The latest updates from RDNZ and the rare disorder community.
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.
Rare Beer brewers needed
As part of Rare Disease Day 2020, RDNZ has teamed up with Fortune Favours craft beer brewers to create a Rare Beer.
Let your voice count to make a difference: NZ Voice of Rare Disorders survey
This survey is open to anyone who is living with a rare disorder in NZ, as well as their family members and carers.
Folic acid fortification of flour
Rare Disorders NZ supports mandatory fortification of bread with folic acid to reduce neural tube defects.
APARDO Regional Collaboration for Global Change Summit
Lisa Foster was an invited speaker at the Asia Pacific Alliance of Rare Disease Organisations (APARDO) summit in Taiwan last month.
Rare Voices Australia: report launched
On 17 October 2019, Rare Voices Australia launched the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, at Parliament House.