Rare Disorders Strategy progress
Rare Disorders NZ has long been calling for a national rare disorders strategy to ensure the health system recognises, and equitably meets the needs of the 300,000 New Zealanders living with a rare disorder.
In 2020, Rare Disorders NZ launched the Fair for Rare campaign calling for acknowledgement and awareness of the common challenges faced by people living with a rare disorder, along with a commitment to address these challenges.
Government commits
In June 2022, Minister of Health Andrew Little announced that he had instructed the Ministry of Health to develop a national rare disorder strategy.
Rare Disorders NZ has since been having ongoing discussions with Manatū Hauora - the Ministry of Health, on the development of the national rare disorders strategy.
Keep updated on the progress of the strategy in the articles below.
Ministry of Health's plan to develop Rare Disorders Strategy
The Ministry of Health have developed an outline plan on the scope, engagement and outcomes for the national strategy.