25 Jul 2024

A plan for rare disorders 20 years in the making

From Afternoons, 1:25 pm on 25 July 2024

The Ministry of Health has released New Zealand's first Rare Disorders Strategy, which aims to improve the health and wellbeing of people living with rare disorders. About 300,000 Kiwis live with a rare disorder, and experts say a dedicated document like this will make a huge difference to their outcomes. 

Rare Disorders NZ has been working with the ministry over the past couple of years to put it together, after advocating for a strategy for over 20 years. 

Jaime Christmas is the CEO of the NZ Amyloidosis Patients Association and has personal experience with a rare disorder in her family.

Ministry of health

Ministry of health Photo: RNZ / Richard Tindiller