The Rare Disorders Strategy outlines the Government's intentions to improve health outcomes for people living with a rare disorder.

While the Strategy guides the long-term priorities for health entities over the next 10 years, the need for improved responsiveness for rare disorders remains urgent.

Progressing the intentions in the Strategy requires government agencies to take immediate action to begin developing implementation plans.

Rare Disorders NZ is focused on monitoring progress and holding the government agencies tasked with implementing and monitoring the Strategy to account. 

We will continue to advocate for an implementation plan and actions within the seven priority areas that were agreed to by our collective of support groups, and reaffirmed following the release of the Strategy.

Progress on Strategy Implementation

• At Rare Disorder NZ's request, Manatū Hauora | The Ministry of Health endeavoured to gather the government agencies tasked with implementing and monitoring the Strategy to discuss implementation.
• Unsuccessful due to Te Whatu Ora | Health New Zealand declining to engage while Te Whatu Ora undergoes their current reset. (Correspondence with Te Whatu Ora | Health New Zealand and Manatū Hauora | The Ministry of Health can be found here.)
• Rare Disorders NZ wrote to Hon Dr Shane Reti, Minister of Health (letter here), and Professor Lester Levy, Commissioner Te Whatu Ora | Health New Zealand (letter here) to urge them to prioritise planning the implementation of the Strategy.
• Hon Dr Shane Reti's response can be found here. 
• Response from Lester Levy can be found here.
• Rare Disorders NZ made an OIA request for the implementation options and minutes from the Executive Leadership Team's discussion about implementing the Rare Disorders Strategy. See OIA papers here.
• TVNZ covered the lack of action to implement the Strategy:

"The health system is under a reset, yes, but the health of people living with a rare disorder cannot be put on hold any longer. The reset phase could be used to plan to implement cost-effective approaches to respond to the needs of people living with a rare disorder. Action can be taken now, beginning with an action plan by Te Whatu Ora."

Chris Higgins, CE Rare Disorders NZ