ERDERA invites researchers, clinicians, patient representatives, funders and national authorities from underrepresented countries to a two‑morning virtual workshop focused on strengthening collaboration in rare disease research. Click here for more specific information on what underrepresented countries are.
The event will present new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development. Outcomes will inform ERDERA guidance for national‑level actions.
Why this matters
People living with a rare disease in smaller or less‑resourced countries often face the longest waits for diagnosis and the fewest opportunities to join research and trials. By aligning needs, sharing good practice and designing realistic support measures, this workshop aims to accelerate earlier diagnosis and more inclusive research across Europe.
What to expect
- Evidence briefing: key findings from ERDERA’s year‑one survey of underrepresented countries, complemented by insights from related European initiatives (e.g. ERA‑LEARN, Alliance4Life).
- Best‑practice snapshots: short talks from patients, clinicians, researchers and funders, plus ERDERA workstreams (diagnostics, clinical trials, education & training, National Mirror Groups) on practical measures that work.
- Facilitated parallel sessions: multi‑stakeholder, multinational groups (using Miro) to identify top challenges on day one and co‑develop actionable solutions on day two across five priorities: policy, collaboration, funding, technical assistance and patient engagement.
- Next steps: synthesis to inform ERDERA guidance for national capacity development in underrepresented countries.
Who should join
- Participants from underrepresented (widening) countries: patient organisations, clinicians, researchers, universities, hospitals, ministries, and research‑funding bodies.
- ERNs, SMEs/industry, and European infrastructures interested in equitable participation and capacity building.
Practical details
- Dates and time: 20–21 November, 09:00–13:00 CET each day
- Format: Online (MS Teams)
- Cost: Free; places prioritised for stakeholders from underrepresented countries
- Accessibility: Plain‑language facilitation; collaborative whiteboards; recordings available to registered participants
- Registration: Register for the workshop
Agenda
20 November
- 08:30–09:00 — Launching for online participants
- 09:00–09:15 — Presentation of workshop aims and explanation of the foreseen activities
- 09:15–09:30 — Overview of the survey on the needs of underrepresented countries (UC) in ERDERA T24.1
- 09:30–10:00 — Best practice examples from patients, clinicians/researchers:
- EJPRD project from JTC 2020 ENISNIP
- EJPRD project from JTC 2020 AAK-INSIGHT and Network Support Scheme event (European Aniridia Conference 2020)
- 10:00–12:45 — Parallel workshops (supported with Miro)
- 12:45–13:00 — Reconvening for the first feedback to plenary
21 November
- 08:30–09:00 — Launching for online participants
- 09:00–10:00 — Best practice examples from funding agencies and ERDERA workstreams
- Funding agencies: presentation of Lithuanian Research Council
- ERDERA workstreams and measures for engagement of underrepresented countries:
- Diagnostic research workstream (WP6 and WP8)
- Clinical trial call management (WP4)
- Education and training (WP20)
- National Mirror Groups (WP23)
- 10:00–12:45 — Parallel workshops
- 12:45–13:00 — Wrap‑up and next steps