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.

Findings from our 2023 Voice of Rare Disorders Survey

• For over half of respondents it took longer than one year to get a diagnosis and, for almost one in five, it took over 10 years.
• 59% of people reported that the disorder impacted a lot on their health and everyday life.
• High utilisation of healthcare services, with the majority having seen a specialist or GP in the 6 months prior to the survey.
• In the year leading up to the survey, many had been in hospital. More than one in three (39%) were in hospital for an average of 12 days as an inpatient, and one in 13 were admitted to ICU for an average of 4.6 days.
• There were few accessible, effective modern medicines available for the majority of people, with most being used to relieve pain and inflammation.
• Around half of people felt that organising care was difficult to manage.
• Two in three people did not feel at all informed about social services, nor financial help available.
• Over half felt that communication and information exchange between different service providers was poor and that professionals are poorly prepared to support them.
• The rare disorder caused a decrease in income for 74% of people.
• 57% had experienced increased tension between family members, and 69% experienced isolation from family and friends, amplified by or caused by their rare disorder.
• One in three people often felt unhappy and depressed and felt they could not overcome their problems, with a further third sometimes having these feelings.

Download the 2024 Impact of Living with a Rare Disorder in Aotearoa New Zealand here.

What will make a difference?

In 2019, the Rare Disorders NZ collective identified the following seven strategic priorities to improve health and wellbeing for people living with a rare disorder.:

DIAGNOSIS
Early and accurate diagnosis of rare disorders

PLANNED PATHWAYS FOR CLINICAL CARE
Coordinated and integrated pathways for cohesive healthcare

ACCESS TO DISABILITY AND SOCIAL SUPPORTS, INCLUDING SUPPORT FOR CARERS
Implement simple mechanisms to ensure appropriate access to disability and social supports

RARE DISORDER MEDICINES
Equitable access to modern rare disorder medicines through a specific assessment pathway

RESEARCH
Coordinated and funded programme of research for rare disorders

DATA COLLECTION
Code and capture relevant data on rare disorders in New Zealand

WORKFORCE DEVELOPMENT
Planned training on rare disorders for health professionals and support staff

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. 
• On 25 July 2024, the Ministry of Health published New Zealand's first-ever Rare Disorders Strategy, heeding the call from Rare Disorders NZ and the patient community after years of advocacy. 
• In 2025, the World Health Assembly, of which New Zealand is a member, adopted a resolution on rare diseases, making rare diseases a global health priority.

Looking ahead

Rare Disorders NZ is focused on ensuring that the health entities responsible for implementing the Rare Disorders Strategy take action to develop an implementation plan without delay.

Our seven strategic priorities listed above, reaffirmed by our collective following the release of the Rare Disorders Strategy in 2024, will continue to guide our advocacy during the implementation of the Strategy. Learn more about these here.