Rare Disorders NZ

Rare Disorders New Zealand is a registered charity that advocates for those with rare disorders, aiming to improve health and well-being for all people living with a rare disorder.

There are upwards of 7000 known rare disorders, that make up an assumed 6% of New Zealand's population, an estimated 300 000. This estimate is based on international data due to New Zealand not having a classification system that includes these rare disorders. No data is currently officially collected on rare disorders in New Zealand, Rare Disorders NZ is trying to change this.

They have and connect people with a large number of support groups for those with a rare disorder, (including one specifically for Maori people with rare disorders).

Rare Disorders NZ also have helpful information on the types of assistance available for those with rare disorders and facts about rare disorders.