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.

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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.