Giving people with Rare Disorders a voice

For New Zealanders living with a Rare Disorder today the impact is significant, affecting not only themselves but extending to affect families and carers, the health system and society. Until now this was poorly understood.

In the largest survey of its kind ever conducted in this country, the 2021 NZ Voice of Rare Disorders Survey builds on a previous survey conducted in 2019. We outlined why a different approach is needed to improve outcomes for people living with rare disorders, their family and whānau.

Image by Jason Rosewell