Rare Disorders NZ, in collaboration with Dr Tara Officer Senior Lecturer in Applied Health Science, School of Nursing, Midwifery and Health Practice, and Adjunct Professor Karen McBride-Henry (both Victoria University of Wellington), is establishing a Rare Disorders Research Network Development Group to support the establishment, growth and evidence-based and whakaaro Māori impact of a network of Aotearoa New Zealand rare disorders researchers.

Expressions of interest in contributing to the development group are invited from internationally respected and networked Aotearoa New Zealand rare disorders researchers.

Learn more in the Terms of Reference here.

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more