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 a centralised mechanism in the health system for rare disorders that we have been calling for.

There are many different ways a leadership and coordination mechanism could look - in the short and long term, in the New Zealand context. Central to the establishment of any mechanism for rare disorders is adequate stakeholder consultation.

RDNZ's work progressing the concept

• July 2025: We met with the National Clinical Networks team at Te Whatu Ora | Health NZ to initiate discussions on the establishment of a rare disorders clinical reference group.
• August 2025: We sought input from support group leads and our Clinical Advisory Panel, guided by the points outlined in this document.
• August 2025: With the collated feedback from both groups, Rare Disorders NZ consolidated it into a draft infographic (see panel to the right).
• September 2025: Chair of the Clinical Advisory Panel, Prof. Stephen Robertson, presented the consolidated feedback to the Cross-Party Parliamentary Group on Rare and Undiagnosed Disorders who were interested in learning more about how such a mechanism could be established.