We are the collective voice for rare

Rare Disorders New Zealand is the respected voice of rare disorders in Aotearoa New Zealand.

We are the national peak body organisation, supporting the 300,000 New Zealanders with a rare disorder and the people who care for them. 

We offer a platform to link people to information and rare disorder groups specific to their disorder, and help people navigate the health system.

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

We connect

We facilitate connections to individual support groups and to information and resources. We also provide a contact point for families affected by genetic conditions so rare that they do not have their own support group.

We help establish new support groups

We offer clear guidance and information on starting a new support group. We also connect groups so they can share knowledge and expertise. 

We empower

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

We raise awareness

We keep rare disorders on the radar of health professionals and politicians, and educate the general public about rare disorders through awareness campaigns and events.

We provide a voice

We provide a voice for the shared concerns of the rare disorder community, We also provide a central point for Government to communicate with the rare disorder community.

We build partnerships

We build partnerships between support groups, clinicians, researchers, government agencies and industry.

We inform

We inform healthcare professionals and decision makers about rare disorders to promote early diagnosis and optimal treatment.

Our Strategic Plan 2024 - 2027

View our Strategic Plan 2024 - 2027 & July 2024 – June 2025 Work Plan here.

Annual Reports

View our Annual Reports here.