RareKids-CAN Co-Leads the Canadian National Mirror Group of the European Rare Diseases Research Alliance (ERDERA) Initiative
As a formal Associate Partner, RareKids-CAN and the Maternal Infant Child and Youth Research Network (MICYRN) are proud to support the launch of the European Rare Disease Research Alliance (ERDERA). In alignment with ERDERA’s mission, RareKids-CAN, in partnership with the Canadian Rare Disease Network (CRDN), co-leads the Canadian National Mirror Group (NMG) of ERDERA. The Canadian NMG will help harmonize Canada’s rare disease initiatives with international standards and strategies, advancing the global effort to improve outcomes for individuals affected by rare diseases.
About ERDERA
ERDERA, part of the Horizon Europe program and co-funded by the European Commission and multiple member states, aims to accelerate research and improve diagnostics and treatments for the over 30 million people living with rare diseases across Europe.
ERDERA builds on the success of the European Joint Programme on Rare Diseases (EJP RD) and brings together an unparalleled coalition of more than 170 diverse public and private stakeholders, including: patient organizations, research institutions, industry leaders, and government bodies. It creates a dynamic research ecosystem that spans everything from funding and education to the translation of research into clinical settings. Led by the French National Institute of Health and Medical Research (INSERM), ERDERA includes partners from 37 countries, including Australia, Canada, Georgia, Iceland, Israel, Morocco, New Zealand, Northern Ireland, Norway, Serbia, Switzerland, and Türkiye. Together, these partners will contribute to the ERDERA’s key pillars: Funding, Clinical Research Network, Support Services, and International Alignment.
RareKids-CAN Contributions to ERDERA
“As co-leads with CRDN in the Canadian National Mirror Group for ERDERA, we will enhance coordination among Canadian rare disease partners while aligning with European research strategies,” says Dr. Thierry Lacaze, Nominated Principal Investigator of RareKids-CAN and Scientific Director of MICYRN. “As a formal Associate Partner of ERDERA, RareKids-CAN/MICYRN will further strengthen international collaboration, identify opportunities for Canadian participation in global initiatives, and ensure access to key international resources. Additionally, we aim to shape research strategies and foster meaningful partnerships with patients and families across Canada.”
Participating members of the Canadian NMG will include Canadian representatives of the Governing Board and Policy Board, representatives of the National Strategy for Rare Diseases, research networks, academic institutions, clinicians, patient partnerships, policymakers, and industry representatives.
To learn more about ERDERA and their upcoming launch event on October 28-29, 2024, you can visit their website.