Our mission
Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Latest news
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.
Folic acid fortification of flour
Rare Disorders NZ supports mandatory fortification of bread with folic acid to reduce neural tube defects.
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.
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.