Researchers, policymakers, patient advocates, and healthcare leaders from across Europe and beyond convened in Sofia, Bulgaria in March, for the European Rare Diseases Research Alliance (ERDERA) National Mirror Groups (NMG) Meeting, ERDERA National Alignment Board (NAB) Meeting and annual IRDiRC Consortium Assembly and Scientific Committees Meeting reinforcing international efforts to accelerate rare disease research and improve patient outcomes worldwide.
The event brought together representatives from a growing network of National Mirror Groups, which serve as national coordination platforms connecting stakeholders involved in rare disease research, healthcare, funding, and patient advocacy. The Sofia meeting provided an opportunity to exchange best practices, align strategic priorities, and strengthen cross-border collaboration in addressing the challenges faced by people living with rare diseases.
A central focus of the discussions was the role of National Mirror Groups in enhancing cooperation between national ecosystems and international research initiatives. Participants explored ways to improve coordination among researchers, healthcare institutions, funding organizations, and patient groups, ensuring that scientific advances translate more effectively into diagnosis, treatment, and care.
The meeting also highlighted the increasing global dimension of rare disease research. Delegations from multiple countries, including IRDiRC, participated in discussions on expanding international partnerships and sharing expertise, in particular considering the added value of NMGs.
Watch the meeting video: https://www.youtube.com/watch?v=L9g3ZeRSZKk