Learn

Patient Support

Get Involved

Raising the rare voice

We are the respected voice for rare disorders in New Zealand.  We advocate for access to world class and world leading health, disability, education and other services for the 300,000 New Zealanders living with a rare disorder. 

About us 

Quick Links

Find a support group

The Rare Disorders Strategy

Parent & Caregiver Guide

Services & Supports

Rare News

Rare Stories

Carol-Anne's story

In 2009, I gave birth to my third child and within months of her birth I became very ill with what I initially considered to be a stomach bug. However, as the weeks continued and I didn't get better I sought my doctor for answers. A blood test was run, common issues were ruled out and the doctor quickly decided nothing was wrong - I just had an irritable bowel. Six months later, as I was just le…

Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.

Browse all stories

Connect with us

Keep up to date with our work by signing up to our regular newsletter.
We contact our supporters roughly once per month, and you can unsubscribe at any time.



Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more