Connecting rare disorders researchers through new network

The Rare Disorders Research Network is a joint collaboration initiative of 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).

Over the years and through their networks Rare Disorders NZ has become increasingly aware of significant research projects being carried out around the country that could be of huge benefit to the rare disorder community yet were often being carried out in silos without awareness of other research work happening simultaneously.

In June 2023 Professor Karen McBride-Henry and her team at Victoria University School of
Nursing, Midwifery and Health Practice received confirmation of Health Research Council
(HRC) funding to develop a rare disorders research network.

The proposal said that “we will bring together a network of RDNZ, RD experts, healthcare
researchers, and those from the RD community to develop a RD research strategy for
Aotearoa. Given the limited evidence of RDs within Aotearoa, this research network will
allow the development of a strategy that can inform future research grant bids that meet
the RD communities’ needs.”

Rare Disorders NZ could see huge benefits in bringing researchers and specialists together to create opportunities for finding common ground, sharing expertise and potentially finding ways to collaborate.

In March 2024, Rare Disorders NZ initiated a Research and Specialist Event in collaboration with Wellington UniVentures to bring together New Zealand-based rare disorders researchers and specialists, inviting participants to give quick-fire presentations of their work.

The suggestion to establish a Rare Disorder Research Network was positively received, and so along with Karen McBride-Henry and Tara Officer, Rare Disorders NZ has worked to establish a Leadership Group to further this initiative.

A Māori rare disorder specialist and Chris Higgins the CE of RDNZ will co-chair the network
to facilitate network engagements and guide the underlying philosophy to ensure tikanga
throughout. The hui will be hosted at RDNZ, with people outside Wellington able to Zoom
in. The purpose of each hui is whakawhanaungatanga (establish relationships) and
developing a research prioritisation strategy.

New Zealand-based researchers interested in joining the Rare Disorders Research Network are encouraged to contact Chris Higgins, chris@raredisorders.org.nz.

Learn more about the Network here.