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

Kayla's story

“This disease is like a sleeping dragon,” the doctor said. “You might have periods of remission, when the dragon sleeps, but it will wake again and you will flare. You’re going to have to adapt your life to manage this illness.” I cried very briefly in the car, then wiped my face and drove home to my infant son. I’d always known I was developing some form of arthritis, I just didn’t think it wou…

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