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.

Our mission

To champion and amplify the collective voice of New Zealanders with rare disorders, advocating for access to world class and world leading health, disability, education and other services.

Our vision 

Best possible health and wellbeing for people and whānau living with rare disorders in New Zealand/Aotearoa.


Aroha – we will demonstrate love, compassion, empathy and respect for people living with rare disorders and we will support and encourage our stakeholders to do likewise.

Whakamana – we will advocate assertively and constructively with strength and resilience, supporting communities of people living with rare disorders to be similarly empowered.

Manawa rahi – we will steadfastly and stout-heartedly maintain an unwavering evidence-based commitment to the RDNZ cause.

Kotahitanga – we will exhibit unity, cohesion and collaboration both internally as a team of staff and volunteers, and externally in our relationships both with New Zealand’s rare disorders community and supporters, and internationally.

Tiakitanga – we will do everything we can to sustain, protect and respect the viability and reputation of our organisation, our fellow team members, those living with rare disorders and the physical, cultural and spiritual environments which sustain us.


In this section

What we do

RDNZ is the respected voice of rare disorders in New Zealand, and is the only national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them.

Rare disorder collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau


The latest updates from RDNZ and the rare disorder community.

Partners and Supporters

The work we do to improve healthcare and wellbeing for people and their whānau living with a rare disorder would not be possible without the support of our partners.

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.


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


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