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

Ellie's story

I am the first link in the chain of my family living with Oro-Facial Digital Syndrome Type 1 aka Papillon-Léage-Psaume syndrome. It is hard. Not just on me, but on my family.I was misdiagnosed as a 3-day-old baby with OFD Type 2 (Mohr's Syndrome), back then they had never heard of it, but as I have kidney failure as an adult, it was proven through researching the difference between the two.I…

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 joining our mailing list.
View our privacy policy here. 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