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.

Rare Disease Day

Rare Disease Day is a day of global solidarity, marked each year around the world on the last day of February (the rarest day of the year) to raise awareness and to advocate for equity for rare disorders.