Otago joins over 170 organisations in the newly formed European Rare Diseases Research Alliance (ERDERA).
Otago now has access to a huge wealth of knowledge and research on rare disorders which could help to diagnose and ultimately treat many more health issues in New Zealanders.
Otago is one of only a handful of non-European partners to become part of the newly formed European Rare Diseases Research Alliance (ERDERA).
Backed by the European Union, over 170 organisations have united, with over 150 million euros in funding available for rare disease research over the next seven years.
Associate Professor Louise Bicknell
Otago's School of Biomedical Sciences Associate Professor in Genetics Louise Bicknell, who is leading the local contribution, is proud that New Zealand has been able to participate in such a large, closed membership initiative.
She is looking forward to building rare disorder knowledge here.
“This is a tremendous opportunity for New Zealand families with rare disorders,” Louise says.
“The power of having this access to information on lots of rare disorder patients means it’s more likely we will find more disease-linked genes or alterations, which will increase the likelihood of a rare disease diagnosis for New Zealand families.”
“At the same time, I also hope to share our unique perspective in considering Indigenous views on genetics with European researchers.”
The University will be using some of the ERDERA funding in two different projects:
- Taking part in the diagnostic data availability project involves sharing New Zealand genetic data (with patient consent and data sovereignty agreements in place) and gaining access to huge international databases for comparison.
- The other project involves setting up a National Mirror Group in New Zealand, a support network similar to other European groups bringing together existing health and research organisations for rare disorders.
Louise has also been appointed as the New Zealand Representative to the Governing Board of ERDERA, where she will be able to contribute to strategic planning for ERDERA and help shape future priorities.
ERDERA is part of Horizon Europe - the world’s largest multilateral research and innovation programme. MBIE is providing a top-up funding scheme for overhead costs to support New Zealand researchers and organisations participating in Horizon Europe projects.
The University is grateful to the Ministry of Business, Innovation and Employment for their support.
~ Kōrero by Claire Grant, Communications Advisor, School of Biomedical Sciences