ERDERA and GDI work together to advance rare disease research and diagnostics
The European Rare Diseases Research Alliance (ERDERA) and the European Genomic Data Infrastructure project (GDI) are joining forces to speed up rare disease research and improve diagnosis across Europe. The collaboration will be launched on 14 October at a half-day workshop in Paris.
The partnership links ERDERA’s work on data and diagnostics with GDI’s European infrastructure for secure genomic data access. In practice, it will help researchers and clinicians find and analyse high-quality genomic and clinical data without moving sensitive information across borders.
ERDERA is a European partnership uniting over 170 public and private organisations across 37 countries to turn research into real benefits for the thirty million Europeans living with a rare disease. The Paris workshop will highlight the activities and objectives of ERDERA and GDI, present updates on technical developments, ethics and regulation and national programmes, and showcase a joint rare disease use case.
Daria Julkowska, ERDERA Coordinator, said: “As a European partnership, we have a responsibility to forge collaborations that avoid duplication and strengthen the whole ecosystem. In that sense, GDI is a critical partner for ERDERA’s Data Services Hub and our diagnostics pipeline. By aligning standards and enabling secure, federated use of genomic and clinical data, we can shorten the journey from data to diagnosis and serve people living with a rare disease more effectively. This collaboration is about turning shared infrastructure into real-world impact.”
Serena Scollen, GDI Project Coordinator, said: “Secure access to high-quality genomic and clinical data is essential for robust rare disease research and faster, more accurate diagnostics. Working together should help connect infrastructure with practice and show tangible benefits for patients and healthcare systems across Europe.”
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Posted: 13 October 2025