In this section

Facts and figures

There are more than 7,000 different types of rare disorders, with more being discovered each day.

Impact of Living with a Rare Disorder

Impact of living with a rare disorder in Aotearoa New Zealand in 2024 Our biennial Voice of Rare Disorders surveys fill a data-gap in our health system to understand the impact living with a rare disorder has on different areas of life, as well as where the needs are and what barriers exist that prevent people from accessing the care they need for a decent quality of life.

Rare disorders in New Zealand

People living with a rare disorder are estimated to make up 6% of New Zealand’s population, yet this large community experiences substantial unmet need and inequitable access to healthcare.

Stories project

Meet some of the 300,000 people living with a rare disorder in New Zealand.

Clinical resources

As a healthcare provider, you may be the first point of contact for someone at the beginning of their life-changing journey of living with a rare disorder.