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.
Voices of Māori living with a rare disorder
As part of the development of New Zealand’s first Rare Disorders Strategy, Rare Disorders NZ worked with Te Aka Whai Ora to engage with whānau Māori to ensure that the voices of Māori living with a rare disorder are reflected in the Rare Disorders Strategy plan.
Our vision for a Rare Support Centre Aotearoa
Rare Disorders NZ has developed a proposal for a Rare and Undiagnosed Disorders Centre of Expertise in the health system, which we believe will make a signficant difference to the health and wellbeing of people living with a rare disorder.
Beyond the Strategy
Rare Disorders NZ, in consultation with domestic and international experts, has identified four essential implementable actions we want to see incorporated into the strategy.
Engaging with stakeholders
Ensuring that the voice of those with lived experience informs New Zealand's first Rare Disorders Strategy has been a cornerstone of the development of the strategy.
Rare Disorder Centre of Excellence - a solution to improve health equity?
Rare Disorders NZ would like to see the establishment of a Rare Disorder Centre of Excellence in New Zealand as a solution to bridging many of the gaps in the delivery of health care to people living with a rare disorder.
Improving engagement with Māori living with a rare disorder
As part of the development of New Zealand’s first Rare Disorders Strategy, Rare Disorders NZ have been having regular, weekly hui with Te Aka Whai Ora to plan how we will engage with whānau Māori to ensure that the voices of Māori living with a rare disorder are reflected in the Rare Disorders Strategy plan.
RDNZ response to the Ministry of Health's initial Rare Disorders Strategy document
Rare Disorders NZ has, as a member of the reference group, provided feedback on the first draft document of the Rare Disorders Strategy.
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.