From Intention to Action

The Rare Disorders Strategy outlines the Government's intentions to improve health outcomes for people living with a rare disorder.

While the Strategy guides the long-term priorities for health entities over the next 10 years, the need for improvements for rare disorders remains urgent.

Government entities responsible for implementing and monitoring Strategy

• The Ministry of Health – Manatū Hauora
• Health New Zealand – Te Whatu Ora
• Pharmac – Te Pātaka Whaioranga 
• the Health Quality & Safety Commission - Te Tāhū Hauora

The Ministry of Health is responsible for supporting these entities to make plans for actioning strategy priorities. The entities are required to report progress against their plans in their performance reports and annual reports.

Aotearoa New Zealand Rare Disorders Strategy, p. 22

Implementation progress

• At Rare Disorder NZ's request, Manatū Hauora | The Ministry of Health endeavoured to gather the government agencies tasked with implementing and monitoring the Strategy to discuss implementation.
• Unsuccessful due to Te Whatu Ora | Health New Zealand declining to engage while Te Whatu Ora undergoes their current reset. (Correspondence with Te Whatu Ora | Health New Zealand and Manatū Hauora | The Ministry of Health can be found here.)
• Rare Disorders NZ wrote to Hon Dr Shane Reti, Minister of Health (letter here), and Professor Lester Levy, Commissioner Te Whatu Ora | Health New Zealand (letter here) to urge them to prioritise planning the implementation of the Strategy.
• Hon Dr Shane Reti's response can be found here. 
• Response from Lester Levy can be found here.
• Rare Disorders NZ made an OIA request for the implementation options and minutes from the Executive Leadership Team's discussion about implementing the Rare Disorders Strategy. See OIA papers here.
• TVNZ covered the lack of action to implement the Strategy:

• On 14 May 2025 Rare Disorders NZ hosted a roundtable at parliament to initiate discussions on the Implementation of the Rare Disorders Strategy in an effort to get work underway, due to an absence of any government action. The two focus areas of the day’s discussions were on diagnosis and access to rare disorder medicines. In attendance were executives from the Ministry of Health, Health NZ, Pharmac, specialists, industry, parliamentarians and consumer representatives.

"The health system is under a reset, yes, but the health of people living with a rare disorder cannot be put on hold any longer. The reset phase could be used to plan to implement cost-effective approaches to respond to the needs of people living with a rare disorder. Action can be taken now, beginning with an action plan by Te Whatu Ora."

Chris Higgins, CE Rare Disorders NZ