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.

Read about the advocacy journey that led to the inception of the Strategy here.

Supporting documents:

Aotearoa New Zealand Rare Disorders Strategy Context and Evidence

Aotearoa New Zealand Rare Disorders Strategy Rare Voices and Aspirations

Our Reflections on the Strategy

While the Strategy is an important first step for the Government to recognise the unique needs and challenges of people living with a rare disorder, it does fall short in certain areas.

Read Rare Disorders NZ's reflections on the Strategy here.

Agencies responsible for implementation

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.

Follow progress on our implementation work.

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.