Our mission

Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder.

The New Zealand Organisation for Rare Disorders (NZORD) was established in September 2000, and changed its name to Rare Disorders NZ (RDNZ) in 2019. RDNZ offers a central starting point for patients and families affected by rare disorders, and helps families, patients and healthcare providers find essential information and support groups.

RDNZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition.

RDNZ is a member of Rare Diseases International and the Asia Pacific Alliance of Rare Disease Organisations (APARDO).

The RDNZ logo features a kōtare, the New Zealand kingfisher. Kingfishers are found throughout New Zealand in a wide range of habitats and are common, but rarely seen compared to other birds. Māori admired kōtare for being like a watchful sentry. Our logo has a sense of action and uplifting movement which fits the continued aims of our organisation.

In this section

What we do

RDNZ is the respected voice of rare disorders in New Zealand.

Fair for Rare campaign

“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.” Helen Clark, United Nations

Partner organisations

RDNZ is connected with partner organisations working for people living with rare disease in other parts of the world.

Round Table of Companies

Established in 2019, RDNZ's Round Table of Companies is a group of pharmaceutical companies with a common interest in rare disorders and orphan drug development.

Our people

RDNZ has a small team of dedicated staff who work part-time from our Wellington office.

Submissions

RDNZ actively engages with rare disease issues by responding to calls for submissions.

News

The latest updates from RDNZ and the rare disorder community.

Newsletters

Bi-monthly news and views from the connector hub and collective voice of rare disorders in New Zealand.