A two‑morning virtual workshop called “Networking of underrepresented countries for the enhancement of rare disease research” will take place on 20–21 November (09:00–13:00 CET) to accelerate collaboration and inclusion of underrepresented countries in European rare‑disease research.
Organised within ERDERA’s work on International Capacity Alignment, the event is open to researchers, clinicians, patient representatives, national authorities and funders from underrepresented countries, also defined as Horizon Europe “Widening” countries.
Why this matters for underrepresented countries
People living with a rare disease need faster diagnosis and better access to studies, yet many national systems still lack the infrastructure, funding or connections to participate fully.
The workshop brings together “users” (researchers, clinicians and patient organisations) with “providers” (funders and ERDERA workstreams) to make collaboration practical for less‑resourced teams, drawing on ERDERA’s Clinical Research Network, Data Hub, and Training and education.
Building on an ERDERA survey with more than 200 respondents across over 30 countries, its sessions will focus on the five priority needs identified: policy, collaboration, funding, technical assistance and patient engagement, alongside insights from ERA‑LEARN and Alliance4Life. This work aligns with ERDERA’s International Alignment activity and National Mirror Groups.
Programme and expected outcomes
Day one will present survey evidence and best‑practice cases from patient organisations and clinical researchers, followed by facilitated parallel sessions to identify the main challenges and priority needs for collaboration and networking in underrepresented countries. Day two will feature inputs from funders and ERDERA workstreams (diagnostics, clinical trial call management, education and training, and National Mirror Groups), and parallel sessions focused on solutions—what works, where, and how to scale it.
Participants will be selected to ensure multi‑stakeholder and multinational representation; discussions will run online focusing on solutions and enablers. In turn, outputs will feed directly into a forthcoming ERDERA deliverable: focused guidelines for national‑level actions to build research and innovation capacity in underrepresented countries.
The workshop runs online via MS Teams on 20–21 November, 09:00–13:00 CET.
Participation is free; although eligibility prioritises stakeholders from underrepresented countries, and others committed to supporting capacity development are welcome. Find the detailed agenda, joining instructions and registration on the Event page.
