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.
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.
Below is an outline of the plan for the development of the strategy:
Keep updated on the progress of the strategy in the articles below.
RDNZ's proposal for a definition of a rare disorder
Rare Disorders NZ believes it is imperative that New Zealand adopts the widely held and internationally established definitions; that a rare disorder is defined as affecting fewer than or equal to 1 in 2,000 persons.
Update from Manatū Hauora on collaboration and strategy progress
This Rare Disorders NZ X Manatū Hauora colab has been fruitful and rated well by participants. More joint events are being planned over the coming months – this will be particularly valuable as work on a rare disorders strategy for New Zealand proceeds.
Pae Ora webinar summary
Summary of the responses shared during the webinars and answers to the questions posted during the webinar.
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.