Vision for a Centre of Expertise

Following consultation with domestic and international stakeholders within the rare disorder sector, Rare Disorders NZ developed a proposal for a Rare and Undiagnosed Disorders Centre of Expertise in the health system, which we believe could make a significant difference to how the system responds to rare disorders.

The Centre would identify gaps in the delivery of service and support in New Zealand’s health and other systems for people living with rare disorders, similar to other initiatives globally.

The proposal was submitted to the Ministry of Health during the development of the Rare Disorders Strategy.

Aligning with the Rare Disorders Strategy

We were pleased to see that Priority 1 of the Rare Disorders Strategy recognises the need for leadership and coordination mechanisms in the health system to spearhead responsiveness to rare disorders.

We believe this aligns well with the development of a Centre of Expertise.

There are many different ways a leadership and coordination mechanism could look - in the short term and the long term in the New Zealand context.

Input from stakeholders will be central to the most appropriate model being chosen.

Progressing the concept

We encourage stakeholders to consider the points outlined in this document to guide feedback.