On 20-21 November the workshop “Networking of Underrepresented Countries for the Enhancement of Rare Disease Research” was held by ERDERA, bringing together 157 participants from 25 underrepresented countries, including Widening and Associated Countries. Their participation was a key element of the event, emphasizing the importance of ensuring that national perspectives with historically limited representation in EU-level initiatives are fully included in shaping the future of rare disease research.
Participants from these countries contributed valuable inputs on capacity gaps, structural barriers, and priority needs – insights that are essential for building a more inclusive and equitable European rare disease ecosystem.
The workshop gathered stakeholders from across the rare disease multi-stakeholder community, including healthcare professionals, researchers, patient organizations, and funding bodies. Throughout the parallel sessions, facilitated by the MIRO tool, participants engaged in discussions, shared national experiences, and identified practical approaches to strengthen research infrastructures, networking, and collaboration. The diversity of voices ensured that the workshop outputs reflect the realities and ambitions of underrepresented countries.
This event represents an important step toward ensuring inclusive participation, visibility, and cooperation across Europe. The input collected will guide ERDERA’s upcoming activities as we continue working together to support a more connected and balanced rare disease research landscape.