Ia
International Alignment
Keeping the rare disease research community connected—locally, nationally and globally—so that research findings, policy solutions and practical tools move smoothly in every direction.
(Inter)national Capacity Alignment
The workstream is organised around three complementary components, each delivered through clearly defined tasks and milestones. It balances progress with global benchmarks, harvesting national insight, integrating proven methods, and circulating new advances across borders.
National Mirror Groups
National Mirror Groups (NMGs) sit at the heart of alignment. These multi-stakeholder hubs—often anchored by a patient alliance—bring together researchers, clinicians, policy makers and funders to:
- Channel national needs and good practice into ERDERA’s annual work plans,
- Disseminate and help implement ERDERA outputs at home, and
- Foster peer-to-peer exchange between countries.
Fostering Engagement of Under-represented Countries
Targeting countries that currently lack critical mass in rare-disease research or policy. Through capacity-development actions, advocacy and tailored support, the team helps emerging communities:
- Access ERDERA funding calls, training and data resources,
- Showcase national strengths, and
- Join NMG activities on equal footing.
Global Collaboration
ERDERA’s vision extends beyond Europe. Under Work Package 25 the partnership:
- Forges strategic alliances with complementary programmes and infrastructures,
- Hosts the IRDiRC Scientific Secretariat, strengthening the science-policy interface worldwide,
- Links Clinical Research Networks with global counterparts and patient organisations, and
- Aligns ERDERA methods with the research strategies of the European Reference Networks.
Programme highlights
An annual State-of-the-Nation survey, Alignment Toolkits translated for local use, train-the-trainer courses, and the forthcoming Country Compass dashboard ensure that evidence, expertise and solutions flow smoothly between national and international levels—ultimately targeting equitable progress for all people living with a rare disease, regardless of their country.
International Alignment updates
“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”
“There’s a lot of value in connecting with other countries — learning what has worked, what hasn’t, and applying those lessons”
