Our mission

Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder

 

Latest news

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.

Nov 5, 2019, 11:06 AM
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.

Oct 21, 2019, 1:35 PM
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.

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