The latest updates from RDNZ and the rare disorder community.
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.
Lisa Foster was an invited speaker at the Asia Pacific Alliance of Rare Disease Organisations (APARDO) summit in Taiwan last month.
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.
Rare Disorders NZ congratulates Rare Diseases International for ensuring that the UN Member States adopted a political declaration on universal health coverage that includes mention of rare diseases.
Rare Disorders NZ welcomes the Government’s recent announcement on cancer care and is urging consideration for a wider, inclusive plan to support all New Zealanders with chronic health conditions.
The Annual General Meeting of Rare Disorders NZ will take place on Thursday 26 September from 10-10.30am at our offices in Newtown.