Rare Disorders NZ

Rare Disorders NZ is the national peak body organisation for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.

- We help people and whānau affected by rare disorders navigate the health system and social supports, and connect families to information, resources and support groups.

- We empower individuals and support groups to advocate for themselves. We facilitate meetings with policy makers and assist with submissions and petitions.

- We proudly use a strong and unified voice to advocate for public policy and services that work for those with rare disorders, and we collaborate with the Government, clinicians, researchers, and industry experts, to promote diagnosis, treatment, services, and research.

Having successfully advocated for New Zealand's first Rare Disorders Strategy, we are now working to ensure it is meaningfully implemented by the Government. Join us in making New Zealand a better place for people living with rare disorders by donating today.