How the Strategy came to be

How the Rare Disorders Strategy came to be

For over 20 years, Rare Disorders NZ along with other patient groups and stakeholders has been calling for action to improve services for people living with a rare disorder.

The call was amplified through Rare Disorders NZ's Fair for Rare campaign in 2020 along with a petition to parliament in 2021 led by Sue Haldane (a parent of a child with a rare disorder) and supported by Rare Disorders NZ. The petition resulted in oral submissions to the Health Select Committee and a meeting with then Minister of Health Andrew Little.

Independent Pharmac Review

The independent Pharmac Review, released in 2022, heeded the call from Rare Disorders NZ's submission for a national Rare Disorders Strategy, and included this in one of its recommendations.

On the day the Pharmac Review was released, the Minister of Health announced that he had directed Manatū Hauora | Ministry of Health to develop a strategy for rare disorders. 

Rare Disorders NZ worked with Manatū Hauora |The Ministry of Health during the development of the Strategy to ensure that the Strategy was informed by lived experience.

The final Aotearoa New Zealand Rare Disorders Strategy was released in July 2024.