The latest updates from RDNZ and the rare disorder community. 

Feb 17, 2020, 3:20 PM
'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.

Feb 13, 2020, 12:24 PM
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.

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.