New Zealand's Rare Disorders Strategy

On 25 July 2024 Aotearoa New Zealand’s first Rare Disorders Strategy was released.

Developed by Manatū Hauora | Ministry of Health, the Rare Disorders Strategy is the first high level, documented intention to improve the health and wellbeing of people living with a rare disorder and their whānau.

The Strategy also marks the first time Aotearoa New Zealand has a definition of what is considered a rare disorder.

Rare Disorders NZ was involved in the development of the Strategy as part of the Reference Group, providing input and feedback on drafts and ensuring lived experience played a prominent role in informing the Strategy.

Rare Disorders NZ will work with the agencies responsible for implementing the Strategy - Manatū Hauora | Ministry of Health, Te Whatu Ora | Health New Zealand, Te Pātaka Whaioranga | Pharmac and Te Tāhū Hauora | the Health Quality & Safety Commission, and closely monitor that the Strategy is adequately actioned to deliver meaningful change to service delivery for people living with a rare disorder and their whānau.

The release of the Strategy marks a significant moment for the rare disorder community and Rare Disorders NZ, who have been advocating for a Strategy for over 20 years. An equitable future for people living with a rare disorder is another step closer.

Supporting documents:

Aotearoa New Zealand Rare Disorders Strategy Context and Evidence

Aotearoa New Zealand Rare Disorders Strategy Rare Voices and Aspirations