Through ERDERA, National Mirror Groups (NMG) have been established in participating counties to strengthen rare disease research and policy alignment, by bringing together key national actors in the field of rare disease including authorities, researchers, funders, healthcare providers, and patient organisations, to ensure a cohesive rare disease community and build an effective bridge to international collaboration.
Each year in ERDERA, a topical workshop is held and NMGs are able to nominate representatives, based on their expertise and the workshop topic, to attend and share the national situation and best practices from their country, as well as learn from other countries and hear about tools and services being developed in ERDERA that can support them.
NMG leads selected the topic of national registries for this year’s workshop. The workshop was held in Riga between 9th-10th June, Latvia and hosted by the Children’s Clinical University Hospital. NMG experts including those running national registries, researchers, clinicians, and policy decision makers, met with the goal of sharing experiences, needs and successes pertaining to national rare disease registries and their role in advancing research. Additionally, representatives from the ERDERA Data Services Hub were invited to inform participants about the latest developments in ERDERA relating to registries and presented various tools and guidelines to support the development and running of a registry.
The first day of the workshop focused on the current status quo of national registries for rare disease and included presentations from different NMGs about national registries within their country. This was a great opportunity for other NMGs, particularly those planning to develop a national registry, to learn valuable lessons from other countries. The second day of the workshop allowed participants to further discuss what makes a national registry effective, the challenges facing national registries, interoperability between registries, and ways to reduce data entry burden.
The workshop highlighted both the progress made and the shared challenges facing national rare disease registries. By bringing together diverse expertise from 28 countries, the workshop reinforced the value of collaboration, knowledge exchange, and alignment between NMGs. While the workshop marked an important step toward strengthening national and international coordination, it also underscored the need for continued collaboration, and broader engagement with countries outside of ERDERA and other international initiatives.
To find out more about National Mirror Groups, click here.