The latest updates from RDNZ and the rare disorder community.
Last Friday Rare Disorders NZ launched a campaign calling for the development of a National Rare Disorder Framework.
Our CE, Lisa Foster, was interviewed four times for Rare Disease Day along with two mums of children living with a rare disease.
The Rare Beer, a very special brew, was launched in Wellington last Wednesday.
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.