The Ministry of Health has released New Zealand’s first health system-led strategy dedicated to people with rare disorders. Globally, there are over 7,000 recognized rare disorders, with new ones being identified each year. Many of these disorders are ultra-rare, sometimes affecting only one or a few individuals in New Zealand. Nevertheless, it is estimated that around 300,000 New Zealanders live with a rare disorder.
Dr. Diana Sarfati, Director-General of the Ministry of Health, emphasized the importance of the New Zealand Rare Disorders Strategy in enhancing the health system’s responsiveness and support for both the rare disorders community and service providers. She stated, “New Zealand needs a rare disorders strategy to improve how the health system responds to and supports those living with rare disorders, as well as the providers trying to meet patient needs.”
To develop the strategy, the Ministry collaborated closely with Rare Disorders New Zealand. This collaboration involved gathering input and insights from members of the rare disorders community, their families, researchers, clinicians, and other sector experts. The New Zealand Rare Disorders Strategy outlines the direction and long-term priorities that will guide healthcare entities over the next decade.
Key organizations involved in the implementation and monitoring of the strategy include the Ministry of Health, Health New Zealand, Pharmac, and the Health Quality and Safety Commission. The Ministry will work with these entities to develop action plans that address the priorities set forth in the New Zealand Rare Disorders Strategy.
