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.

Sep 21, 2023, 11:40 AM
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.

Aug 12, 2023, 4:21 PM
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.

Aug 10, 2023, 12:10 PM
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.  

Aug 8, 2023, 11:15 PM
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.

May 2, 2023, 12:22 PM
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.

Apr 27, 2023, 12:09 PM
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.

Apr 19, 2023, 12:20 AM
Pae Ora webinar summary

Summary of the responses shared during the webinars and answers to the questions posted during the webinar.

Apr 18, 2023, 10:21 AM
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.