Advancing rare disorders research connections

Rare Disorders NZ Chief Executive, Chris Higgins attended the European Rare Diseases Research Alliance (ERDERA) workshop entitled “How to maximise the power of national plans for rare diseases and strengthen their capacity to foster rare-disease research” in Riga, Latvia, on 3rd June.

ERDERA is an alliance of organisations from across Europe and beyond that seeks to advance rare disease research and collaboration to improve rare disease prevention, diagnosis and treatment.

Chris joined University of Otago Associate Professor and researcher Louise Bicknell, who has been involved with ERDERA for some time. Chris and Louise, along with Philip Wilcox of University of Otago are working towards RDNZ becoming the host of a New Zealand ERDERA national mirror group, which will open up a host of opportunities for international collaboration for New Zealand rare disorders researchers.

For researchers working within the rare disorders space, it is particularly important to be connected internationally to share learnings and experience, and this initiative will help progress this and compliment the work already being done through the Rare Disorders Research Network in New Zealand. This network was established in 2024 by Rare Disorders NZ in collaboration with Dr Tara Officer and Adjunct Professor Karen McBride-Henry (both Victoria University of Wellington) to better connect New Zealand based rare disorders researchers.

Chris was asked to deliver a plenary case study presentation at the ERDERA workshop talking about how New Zealand has been developing its rare disorders research capacity when implementation of the national plan (aka the New Zealand Aotearoa Rare Disorders Strategy) has stalled. Key points from Chris’ presentation included:

• Confirmation that Rare Disorders NZ will host the New Zealand National Mirror Group;

• The National Mirror Group will play a key part in the development of a rare disorders research strategy;

• Broadening the research network’s scope to include clinical trials, industry, and consumer voices;

• The Rare Disorders Research Leadership Group/National Mirror Group will influence the implementation of the Rare Disorders Strategy, rather than the other way round.