Implementation of the Rare Disorders Strategy
Working to ensure the Strategy leads to change
The Rare Disorders Strategy outlines the Government's intentions to improve health system responsiveness for people living with a rare disorder. The sooner these intentions are acted upon, the sooner we will begin to see improvements in the health and wellbeing of those affected.
The following government agencies are tasked with implementing and monitoring the Strategy:
- Manatū Hauora | The Ministry of Health,
- Te Whatu Ora | Health New Zealand,
- Te Pātaka Whaioranga | Pharmac
- Te Tāhū Hauora | the Health Quality & Safety Commission.
These entities are required to make plans for actioning the Strategy with support from Manatū Hauora | The Ministry of Health and will report progress against these plans in their performance reports and annual reports.
Rare Disorders NZ's primary focus moving forward is on monitoring progress and holding the agencies to account. We will continue to advocate for implementable actions within the seven priority areas that were agreed to by our collective of support groups, and reaffirmed following the release of the Strategy.
