Rare Disorders NZ

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

Wellington

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.

More about us

Rare Disorders NZ is the connector hub & collective voice for people affected by rare disorders and their families. We advocate for an equitable health system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.

Latest donations

Dianne on 27 Jan 2026

Thank you to all the Team at RDNZ, you all do such a fantastic job for a difficult complex service to all of us out here with a Rare Disorder Ngā mihi nui ANCA Associated Vasculitis NZ Inc

$200

Rare Disorders NZ

Kia ora Dianne, Ngā mihi nui for your generous donation and your kind words. Your support means so much to our whole team, and we’re truly grateful for the work you do within ANCA Associated Vasculitis NZ Inc as well. The rare disorders community is full of people doing incredible mahi under incredibly complex circumstances, and messages like yours remind us why this work matters so much. Thank you for standing alongside us and helping strengthen the voice of those living with rare conditions across Aotearoa. We deeply appreciate your koha and your encouragement. Ngā manaakitanga, The Team at Rare Disorders NZ

Kalavati Narsai on 09 Sep 2024

We appreciate and thank all our family and friends who made thoughtful donations to Rare Disease NZ in memory of Kalavati Narsai.

$3,540

Rare Disorders NZ

Kia ora family and friends of Kalavati Narsai, Rare Disorders New Zealand extends our deepest condolences for your loss and our gratitude for your generous donation. Your support is invaluable to us and makes a significant difference in the lives of individuals and families affected by rare disorders. If you would like to be kept informed about the impact of your generous donation, please email us at: gemma@raredisorders.org.nz. Thank you for your compassion and generosity. Together, we can make a lasting impact on the lives of those with rare disorders. Ngā mihi, Rare Disorders New Zealand

Guest Donor on 13 Aug 2024

In memory of Kalavati Narsai.

$25

Rare Disorders NZ

Thank you so much. We would like to contact Kalavati's family to thank them and offer our condolences, please pass on our email enquiries@raredisorders.org.nz if possible.