Global Collaborations

Rare diseases affect small and often widely dispersed patient populations.Expertise,data and research opportunities are spread across countries — and no single organisation or region can address these challenges alone.

Through global collaboration, ERDERA connects people,infrastructures and clinical networks internationally, helping to share knowledge, align priorities, and reduce duplication. This enables better research, faster learning, and clearer pathways from discovery to care — always with patients at the centre.How it works:

  • Connecting globally 
    We link researchers, clinicians, patients, infrastructures and networks across borders.
  • Turning priorities into action 
    Shared needs are translated into concrete activities such as calls, services, events and resources.
  • Sharing outcomes openly 
    Research outputs, tools, events and insights are shared back with the wider community.

Strategic Alliances

Building long‑term partnerships to align priorities,standards and action.

Supporting IRDiRC

Contributing to global rare disease research coordination through theIRDiRC Scientific Secretariat.

Global CRN networks

Connecting international clinical research communities to strengthen trial readiness and collaboration.

ERN alignment

Working with European Reference Networks to link research and care more effectively.

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The 2nd International Conference on Clinical Research Networks (CRNs), organised by European Rare Diseases Research Alliance (ERDERA), Rare Disease International (RDI) and International Rare Diseases Research Consortium (IRDiRC), brought together the global rare disease community to advance innovative clinical research solutions, with a special focus on low- and middle-income countries (LMICs).
Key takeaways from ERDERA’s first in-person meeting uniting countries on rare disease research.
Bringing clinicians, researchers, patient representatives and families together, the event examined how shorter diagnostic pathways depend not only on better tests, but on shared expertise, structured phenotyping and patient-centred support.
Taking place at a pivotal moment – with the European Rare Disease Plan expected to move forward significantly during 2026 – the meetings brought together National Mirror Group (NMG) representatives from Europe and beyond, alongside European Commission stakeholders, IRDiRC and international partners.