RDNZ urges Government to include Rare Disorders Strategy in Pae Ora legislation

With the Government set to make a number of amendments to the Healthy Futures (Pae Ora) Act, Rare Disorders NZ is calling for the Government to incorporate the Rare Disorders Strategy as one of the official health strategies in the Healthy Futures (Pae Ora) legislation.

The Rare Disorders Strategy was released by the Ministry of Health in 2024, during the current Government’s term. Similar to the other health strategies in the Act it outlines five priorities to guide health entities over the next ten years to improve equitable access to healthcare. Currently, the health strategies in the legislation are:

• New Zealand Health Strategy
• Pae Tū: Hauora Māori Strategy
• Te Mana Ola: The Pacific Health Strategy
• Health of Disabled People Strategy
• Women’s Health Strategy
• Rural Health Strategy
• Mental Health and Wellbeing Strategy (under development)

“The Government has recognised that people living with rare disorders face significant barriers to equitable health care. They have invested in the development of the Rare Disorders Strategy. We see no reason for them not to incorporate the Strategy into legislation as a health strategy, as was done with the Mental Health and Wellbeing Strategy, which was added in 2024,” says Chris Higgins, Rare Disorders NZ Chief Executive.

There are estimated to be 300,000 New Zealanders living with a rare disorder. Surveys by Rare Disorders NZ have revealed significant gaps in the health system preventing people living with rare disorders from accessing timely diagnosis and appropriate health care and treatments.

“Legislating the Rare Disorders Strategy as a health strategy is the only way to genuinely demonstrate commitment to the 6% of New Zealanders living with a rare disorder. It would ensure they are consistently considered in future system changes, investment decisions, and performance monitoring, as is required by the Strategy itself,” says Higgins.

Rare Disorders NZ has made a submission to the Health Committee on the Healthy Futures (Pae Ora) Amendment Bill, which can be accessed here.