Rare Disorders Strategy

Better health outcomes for people with rare disorders

This strategy is the first national health system-led strategy for all people and their whānau living with rare disorders to share in pae ora (healthy futures) and live fulfilling lives. It sets out the direction for the health system and provides a framework and long-term priorities that will guide entities in improving health and wellbeing for people and their whānau over the decade 2024 to 2034.

Aotearoa New Zealand Rare Disorders Strategy

Why we need a Rare Disorders Strategy?

We have heard from people and their whānau living with rare disorders that they often face significant barriers to getting timely, effective and equitable health care. Practitioners may find it difficult to diagnose rare disorders or may not know how to support their health and wellbeing.

In response to the recommendations in the Pharmac Review Final Report 2022 the previous and current government’s agreed to the development of a strategy to improve the lives of people and whānau living with rare disorders.

The strategy will improve system responsiveness and support for people and their whānau living with rare disorders, as well as service providers who often face difficulties meeting patient needs

What the Aotearoa New Zealand Rare Disorders Strategy will achieve?

The 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 takes 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.

Contact details

There are several groups involved in the provision of high quality and equitable health care for people and their whānau living with rare disorders. The Ministry of Health will support health entities to make plans for actioning the Aotearoa New Zealand Rare Disorders Strategy priorities. Entities will report back to the Ministry on progress against these plans in their performance reports and annual reports.

• Health New Zealand | Te Whatu Ora are responsible for implementing the strategy through coordination with health service providers.
• Pharmac are responsible for the funding of rare disorders medicines.
• The Health & Disability Commissioner provides a free and independent advocacy service to help with concerns about providers or service.

Other roles in actioning the Strategy:

• The Ministry of Disabled People – Whaikaha, the Ministry for Children – Oranga Tamariki,  the New Zealand Blood Service - Te Ratonga Toto O Aotearoa have a role as central government agencies serving populations to whom rare disorders are important (are not directly accountable for strategy implementation).
• Rare Disorders New Zealand supports New Zealanders and their whānau who live with rare disorders, and the people who care for them. RDNZ can link people to information and specific rare disorder groups.

Read the Rare Disorders Strategy

Aotearoa New Zealand Rare Disorders Strategy