The European Genomic Data Infrastructure (GDI) project and the European Rare Diseases Research Alliance (ERDERA) have formally announced a strategic collaboration by signing a Memorandum of Understanding (MoU). Both initiatives share a common vision of advancing cross-border access to health-related data and fostering innovation in research and personalised healthcare.
The GDI project aims to establish the data infrastructure for realising the 1+ Million Genomes (1+MG) initiative to accelerate the deployment of genomic medicine at the European level, supporting the development of personalised prevention, diagnosis and treatment.
ERDERA unites 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. GDI and ERDERA held a joint workshop in October 2025, aligning technical developments, ethics and regulation, and discussing the collaboration on a joint rare disease use case.
The MoU sets the framework and strengthens the strategic collaboration between GDI and ERDERA. One key focus is to work collaboratively on tackling the challenge of making ERDERA data available via GDI. This includes addressing regulatory and technical barriers to cross-border access to various data, such as genome data, health data and clinical data. The strategic collaboration will enable knowledge sharing and advance population genomics research in Europe.
GDI and ERDERA look forward to expanding the collaboration to advance secure cross-border data access, accelerate research in rare diseases and support the development of personalised medicine across Europe.
About GDI
The European Genomic Data Infrastructure (GDI) project – co-funded by the European Union’s Digital Europe Programme (101081813) – is enabling access to genomic and related phenotypic and clinical data across Europe. It is doing this by establishing a federated, sustainable and secure infrastructure to access the data. It builds on the outputs of the Beyond 1 Million Genomes (B1MG) project and is realising the ambition of the 1+Million Genomes (1+MG) initiative.gdi.onemilliongenomes.eu
About ERDERA
The European Rare Diseases Research Alliance (ERDERA) is a European partnership uniting over 170 public and private organisations across 37 countries. Co-funded by European Union’s Horizon Europe Programme (101156595), ERDERA aims to have a major impact on rare diseases by supporting patient driven research to develop new treatments and diagnostic pathways and harnessing the potential of health and research data, and digital technologies.erdera.org