Manatū Hauora | the Ministry of Health is developing a rare disorders strategy for New Zealand.
Better health outcomes for people with rare disorders
This strategy will be the first national strategy for pae ora | health and wellbeing for people and whānau living with rare disorders in Aotearoa New Zealand.
Why a rare disorders strategy?
We have heard from people and whānau with rare disorders that they can experience inequitable health outcomes and these outcomes are often influenced by unfair barriers, such as timely access to services and experiences navigating the health system.
In response to the recommendations from the independent review of Pharmac in June 2022, the Government agreed to the development of a strategy to improve the lives of people and whānau living with rare disorders.
What will a rare disorders strategy do?
A strategy will provide a framework to guide health entities in improving health outcomes for people with rare disorders and their families or whānau. It will uphold the principles of Te Tiriti o Waitangi. It will also allow the health sector to provide better support for people with rare disorders, as well as making it easier for people, practitioners, and organisations to get the information and support that will help.
The strategy will build on the knowledge already established within the Pae Ora Strategies:
- New Zealand Health Strategy
- Hauora Māori Strategy
- Te Mana Ola – Pacific Health Strategy
- Health of Disabled People Strategy
- Women’s Health Strategy
- Rural Health Strategy
Knowledge of rare disorders is expanding rapidly worldwide, and the strategy will help with adopting advances in science and progress being made internationally. It will build on the opportunities we now have in a more unified and consistent health system with a heightened focus on equity of outcomes, especially for Māori, Pacific peoples and disabled people.
It will take into account New Zealand's commitment to the United Nations Convention on the Rights of Persons with Disabilities (UNCRDP), and the principles and vision for health and wellbeing set out in the New Zealand Disability Strategy 2016-2026.
The rare disorders strategy is expected to be available within the next 12 months.
If you would like to provide information that we should consider as we develop the strategy, email: [email protected]
Rare Disorders New Zealand supports New Zealanders who live with a rare condition, and the people who care for them. RDNZ can link people to information and specific rare disorder groups.
The Health & Disability Commissioner provides a free and independent advocacy service to help with concerns about providers or service.