Aligning rare disorders research globally

In March, our Chief Executive Chris Higgins represented New Zealand rare disorder research stakeholders in three international forums in Sofia, Bulgaria, linked to our recent membership of the European Rare Disease Research Alliance (ERDERA) as its newest National Mirror Group (NMG).

The ERDERA National Alignment Board meeting was an important opportunity to gather national representatives and international partners to connect in person and reinforce alignment in national approaches to rare disorders research.

Chris contributed to discussions about the development of a Commonwealth network of NMGs (with Canadian, UK and Australian colleagues), and participated in a panel discussion about the benefits of being an NMG with an audience comprising representatives from both ERDERA and IRDiRC (International Rare Diseases Research Consortium).

Not only does this give New Zealand visibility on world stages, it also helps us to benefit from others who have moved beyond the initial steps we’ve been taking with our own local rare disorders research network.

All of this is important because it supports us to:

• Adopt best practice approaches to capacity building
• Implement New Zealand’s Rare Disorders Strategy
• Implement strategies and goals for undertaking impactful research and improving rare disorder healthcare
• Develop momentum on rare disorders research
• Facilitate bringing people together for funding opportunities eg HRC, MBIE and Research Funding NZ
• Establish a European Horizons gateway for rare disorders research in New Zealand

Following his trip to Sofia, Chris as NZ NMG Chair, gave a presentation in Auckland on the value of these forums and how they contribute to New Zealand’s rare disorders research journey, which can be seen here.