Resources & Reports
Access reports and resources about rare disorders in New Zealand below.
Aotearoa New Zealand Rare Disorders Strategy
New Zealand's first official strategy to improve the health and wellbeing of people living with a rare disorder and their whānau.
2024 Impact of Living with a rare disorder in Aotearoa New Zealand
White paper based on the results of our 2023 Voice of Rare Disorders survey.
2024 Impact for Whānau Māori of Living With a Rare Disorder
White paper based on the responses from Māori in our 2023 Voice of Rare Disorders Survey.
Te Aka Whai Ora Whānau Voice 2023 Summary
Report of the responses from engagement with whānau Māori to help inform the development of the Rare Disorders Strategy.
Rare Disorders Insights Report: Pathways towards better health outcomes
Developed by BERL, this report was commissioned by Rare Disorders NZ to obtain an insight into the likely prevalence of rare disorders in New Zealand.
Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand
Booklet created by Rare Disorders NZ to help parents and caregivers navigate the path in caring for a child with a rare disorder in New Zealand.
2022 Impact of Living with a rare disorder in Aotearoa New Zealand
White paper based on the results of our 2021 Voice of Rare Disorders survey.
2020 Impact of Living with a rare disorder in Aotearoa New Zealand
White paper based on the results of our 2019 Voice of Rare Disorders survey.
