Parent & Caregiver Guide

Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand

This booklet has been created by Rare Disorders New Zealand to help parents and caregivers navigate the path in caring for a child with a rare disorder in New Zealand.

By gathering insights and advice from parents and caregivers who share this journey, as well as information and resources that may help along the way, we hope to provide a guide of sorts – to help you find what works best for your whānau.

While we do not have all the answers, we hope this guide provides reassurance that there are many others going through a similar journey and that support is available.

The guide was launched on 28 February 2023, Rare Disease Day, at Government House, by our patron Her Excellency, The Right Honourable Dame Cindy Kiro, GNZM, QSO, Governor-General of New Zealand.

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For more information on any of the topics in this guide, please contact Rare Disorders NZ at enquiries@raredisorders.org.nz