Rare Disorders Strategy progress
Rare Disorders NZ has long been calling for a national rare disorders strategy to ensure the health system recognises, and equitably meets the needs of the 300,000 New Zealanders living with a rare disorder.
Rare disorders in New Zealand
People living with a rare disorder are estimated to make up 6% of New Zealand’s population, yet this large community experiences substantial unmet need and inequitable access to healthcare.
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 no data is offically collected in New Zealand on rare disorders. This is because the classification system for diseases that New Zealand uses does not include most rare disorders. Learn more about this in our Insights Report by BERL.
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.
The rare disorder community has collectively identified seven strategic priorities to improve health and wellbeing for all people living with a rare disorder. Learn more about these here.
After years of advocacy, which escalated under our Fair for Rare campaign, Manatū Hauora | Ministry of Health was directed in June 2022 by then Minister of Health Andrew Little to develop a national rare disorder strategy. In July 2024 Aotearoa's first Rare Disorders Strategy was released. Access it here.
In this section
BERL Rare Disorders Insights Report
Rare Disorders Insights Report: Pathways Towards Better Health Outcomes
Fair for Rare NZ
On 28 February 2020 - Rare Disease Day, RDNZ and our collective of support groups launched the Fair for Rare NZ campaign, calling for the development of a National Rare Disorder Framework.
Our priorities
The rare disorder community has collectively identified seven strategic priorities to improve health and wellbeing for people living with a rare disorder.