The Canadian Rare Disease Network (CRDN) is proud to support the newly launched European Rare Diseases Research Alliance (ERDERA) through the co-development of a Canadian National Mirror Group (NMG) with the Maternal Infant Child and Youth Research Network (MICYRN) and RareKids-CAN.
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.
CRDN Co-Leading Efforts in ERDERA
CRDN, alongside RareKids-CAN, will co-lead the development of the Canadian National Mirror Group (NMG) of ERDERA, ensuring that Canada’s rare disease landscape is aligned with international standards and strategies, and advancing our shared goals of improving rare disease outcomes worldwide.
“We are excited to join this international effort and work closely with ERDERA and partners to ensure that Canadian rare disease patients benefit from the latest advancements in research and treatments. Together, we will drive forward collaborative efforts that not only support research but also ensure its translation into meaningful outcomes for patients,” says Dr. François Bernier, Chair of the CRDN and Director of the Alberta Children’s Hospital Research Institute, and Dr. Thierry Lacaze, Scientific Director of MICYRN and Principal Investigator of RareKids-CAN.
The objectives of the Canadian NMG will be to:
- Foster coordination among RD bodies/groups within Canada and promote alignment with the European RD research strategy.
- Support Canadian participation in international RD partnerships by shaping activities and identifying new opportunities.
- Serve as a gateway to international initiatives, providing support for Canadian researchers’ involvement and promoting the use of global resources.
- Provide advice on RD research strategies, aligning with national frameworks and promoting international collaboration.
- Support patient organizations in fostering meaningful partnerships within the Canadian RD ecosystem.
Members in the Canadian NMG will include Canadian representatives of the Governing Board and Policy Board (Canadian Institutes of Health Research (CIHR), Fonds de Recherche du Québec – Santé (FRQS)), representatives of the National Strategy for Rare Diseases, research networks, academic institutions, clinicians, patient partnerships, policymakers, and industry representatives.
To celebrate the launch of ERDERA and for a more in-depth presentation of the partnership, its objectives and activities, ERDERA will hold a kick-off event from 28-29 October 2024.
For more information on ERDERA and its upcoming kick-off event, visit ERDERA’s website and read its news release.