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.

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.