Laying the foundations of an Aotearoa New Zealand rare disorders research strategy

On 25th March Rare Disorders NZ, alongside Victoria University of Wellington, hosted the first in-person get-together of the newly established Rare Disorders Research Network.

The event provided an opportunity for members to come together, network, and lay the foundations for developing an Aotearoa New Zealand rare disorders research strategy.

The day began with an introduction from the co-chairs of the network, Rare Disorders NZ Chief Executive Chris Higgins and Associate Professor Phillip Wilcox of University of Otago, followed by a presentation by Professor Stephanie Hughes from University of Otagoabout the Research Alliance for Rare Illness Translational Pathways (RARITY) that she is Director of, which aims to educate researchers and students on how to get their research from benchtop to bedside.

An interactive session followed, co-facilitated by Phillip Wilcox and Chris Higgins regarding what a rare disorder research strategy would look like in New Zealand. The discussion brought about insightful suggestions to bridge some of the many gaps that currently exist for rare disorders research in New Zealand, including the need for coding of rare disorders in the national Electronic Medical Record to ensure rare disorder data is being captured, and the need for some mapping of what types of research are currently being undertaking to know who is doing what, how they can help each other, and to identify gaps.

Following a networking lunch, a final session was held about the European Rare Disease Research Alliance (ERDERA) and its significance for New Zealand, led by Professor Gareth Baynam of Australia National University, Associate Professor Louise Bicknell of University of Otago and Professor Hugh Dawkins, Executive Director, DA Precision Health, Western Australia.

The initiative and establishment of the Rare Disorders Research Network is the result of a joint collaboration between Rare Disorders NZ and 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).

The network was established in late 2024 and now has over 30 members. If you are interested in joining the network, please contact chris.higgins@raredisorders.org.nz