Rare disorders in New Zealand

What are the numbers?

People living with a rare disorder are estimated to make up 6% of New Zealand’s population.

With over 7,000 known rare disorders, individually these disorders occur in very small numbers in the population, but collectively, rare disorders are estimated to affect 300,000 people in New Zealand.

This is, however, only an estimate based on international data, as data on rare disorders are not systematically collected in New Zealand.  Learn more about this in our Insights Report by BERL.

What are the shared challenges?

Regardless of their specific disorder, from our own surveys we know that those affected share the same challenges and systemic barriers in New Zealand - lack of timely diagnosis, poor treatment access, lack of coordinated care, isolation, significant carer impact and for many, being lost in the system.

What are the solutions?

After years of advocacy from RDNZ and the rare community calling for a framework/strategy specifically for rare disorders which escalated under our Fair for Rare campaign, the New Zealand Government in June 2022 finally committed to developing Aotearoa's first Rare Disorders Strategy.

Manatū Hauora | Ministry of Health launched the Aotearoa New Zealand Rare Disorders Strategy on 25 July 2024. Find out more here. 

Looking ahead

Rare Disorders NZ will be closely involved with the implementation of the Rare Disorders Strategy. There are seven strategic priorities collectively identified by the rare disorder community to improve health and wellbeing for all people living with a rare disorder. These will continue to guide our advocacy during the implementation of the Strategy. Learn more about these here.

The New Zealand Government's commitment to rare disorders

In 2021, New Zealand signed the United Nations Resolution on Persons Living with Rare Disorders (UNRPLRD). Access the resolution here.

In July 2024, New Zealand's first national Rare Disorders Strategy was released.