Rare Disorders NZ

Rare Disorders NZ is the connector hub for people affected by rare disorders and their families to find essential information and links to rare disease support groups.

Rare Disorders NZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.

Rare Disorders NZ is a co-designing partner, working with Manatū Hauora - Ministry of Health on New Zealand's first Rare Disorders Strategy and is ensuring the lived experience is informing the development of the strategy.

For the Rare Disorders Strategy to deliver on its intentions to ensure the health system responds and relates equitably to rare disorder patients and improves their quality of life, it will need to include a minimum set of actionable items to drive change. Rare Disorders NZ has identified four essential implementable actions we want to see incorporated into the strategy:

- Rare and Undiagnosed Disorders Centre of Expertise,

- Single barrier-free pathway to rare disorder medicines,

- Incorporating coding of rare disorders in the classification system of diseases

- Rare Disorders NZ is a key enabler for the Strategy's implementation.

Rare Disorders NZ is working hard to ensure these actions are included into the strategy to ensure it leads to meaningful change in the health system for people living with a rare disorder.