The latest updates from RDNZ and the rare disorder community.
Time is of the essence for a Nelson man with a rare genetic condition that causes his tissue to turn to bone.
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.
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.
Rare Disorders NZ congratulates campaigners after PHARMAC announced their decision to fund a medicine for people living with cystic fibrosis in New Zealand.
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.
Kaitlyn McAlpine is a fearless mountainbiker but her rare condition means she cannot brush her hair.
Our CE Lisa Foster and Nicola Swan from SWAN NZ attended the launch of National's Health Discussion document last week.
As part of Rare Disease Day 2020, RDNZ has teamed up with Fortune Favours craft beer brewers to create a Rare Beer.
This survey is open to anyone who is living with a rare disorder in NZ, as well as their family members and carers.
Rare Disorders NZ supports mandatory fortification of bread with folic acid to reduce neural tube defects.