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, Rare Disorders NZ is now currently working with Manatū Hauora on the development of a national rare disorder strategy. Find out more here.
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.
The rare disorder community and their whānau are voters too. Given the significant impact these conditions have on every aspect of their daily lives, we asked each party where it stands with regard to key priority areas identified by the rare disorder community to improve their health and wellbeing.
In late 2022, with pro-bono support from medical communications specialists Costello Medical, Rare Disorders NZ hosted a multidisciplinary virtual roundtable event involving key stakeholders from both New Zealand and overseas.
The Voice of Rare Disorders survey was conducted in November 2021 by Rare Disorders NZ to fill a significant data-gap in the New Zealand health system, due to the lack of official data collected on rare disorders.