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.

Expressions of interest to become a member of the group and leadership group are welcomed from internationally respected and networked Aotearoa New Zealand rare disorders researchers through this form.

Learn more about the expectations and scope of the group here.

A leadership group will be set up to support the establishment, growth and evidence-based and whakaaro Māori impact of a network of Aotearoa New Zealand rare disorders researchers.

All members will be willing to develop their understanding of Te Tiriti and to demonstrate culturally appropriate behaviour, reflecting RDNZ’s commitment to operating in a way that honours tangata whenua and Te Tiriti o Waitangi.

Any questions or requests for further information, please contact chris@raredisorders.org.nz.

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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, and we work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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