The latest updates from RDNZ and the rare disorder community. 

Feb 11, 2020, 5:02 PM
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.

Jan 26, 2020, 5:59 PM
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.

Jan 13, 2020, 6:03 PM
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.

Dec 23, 2019, 2:05 PM
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. 

Dec 16, 2019, 1:47 PM
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.

Dec 10, 2019, 10:47 AM
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.

Nov 18, 2019, 1:02 PM
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.

Nov 13, 2019, 10:07 AM
Folic acid fortification of flour

Rare Disorders NZ supports mandatory fortification of bread with folic acid to reduce neural tube defects.

Nov 5, 2019, 11:06 AM
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.

Oct 21, 2019, 1:35 PM
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.