ERDERA is a new consortium of > 170 organisations from 37 countries, all focused on improving the lives of people with rare disorders. It is a co-funded partnership, with significant support from Horizon Europe and other funding sources - worth more than € 380 million over the next seven years. 

Led by Louise's efforts, the University of Otago is now an official partner in this consortium - supported by MBIE and Horizon Europe. We are the only group from New Zealand, and hope to represent New Zealand in various ways in the consortium.

The activities ERDERA will support include:

• Joint Transnational calls for interdisciplinary and collaborative research and innovation projects;

• Setting up of the Clinical research network to accelerate the clinical trials preparedness on rare diseases;

• Alignment and integration of national and European research plans;

• Knowledge and data sharing and analyses services;

• Enhancing international cooperation by supporting the Scientific Secretariat of the International Rare Disease Research Consortium (IRDiRC);

• Boost public-private research collaboration models;

• Capacity-building and training, for researchers, but also clinicians and patients. 

While it is Europe-focused, we hope to push for opportunities to be more global wherever possible!

For the latest news and activities, visit the ERDERA website

How will University of Otago/New Zealand be involved?

There is lots happening in ERDERA and we were lucky to be able to join - there wasn't much time between New Zealand officially becoming a partner in Horizon Europe and the application deadlines. We greatly appreciate the hard mahi from the University Research Office and MBIE staff to support and confirm our involvement.

We will be participating in two main project goals:

1. Data sharing - here we will be sharing genetic data into a large, protected database to help identify more genetic alterations causing a rare disorder (with consent and data sovereignty plans in place). We know that the more samples we can analyse together, the higher the chance of finding new  genetic alterations. Our goal is to ultimately improve diagnosis rates for New Zealanders. We will also hopefully be able to access some of the latest technology to analyse DNA, to help find more alterations that could be underlying a rare disease.

2. Building and aligning national capacity - we are being supported to help gather together experts from around New Zealand, to help drive further momentum for issues that arise for people with rare disorders. This could be through improving systems, bringing visibility to issues, and sparking collaborations with healthcare professionals, government officials and community patient groups for activities and research. We are excited to be working with Rare Disorders New Zealand to achieve this. We will be working with other similar groups from the other countries involved, to learn from each other and work together if possible.

After 3 years there will be a refresh, and we hope to be able to participate in more goals after this refresh.

Louise is also the Principal New Zealand Representative on the ERDERA Governing Board, which has oversight and helps set strategy on activities and future directions. It is an amazing chance to bring back knowledge and insight to share, to alert people to opportunities for education and research activities, and shape our future .

Media about our role in ERDERA:

University of Otago News Item