Ana Rath, Data Services Co-Lead in ERDERA, explains how the consortium is helping researchers and data holders make rare disease data more findable, interoperable and reusable while protecting privacy and keeping data holders in control.
ERDERA contributed to the first Journée nationale FrBioNet, bringing a European rare disease perspective to discussions with the French biobanking community.
Held in Riga on 9–10 June, the workshop brought National Mirror Group experts, researchers, clinicians and policymakers together to exchange practical lessons on how national rare disease registries can better support research and alignment across countries.
The European Rare Diseases Research Alliance (ERDERA), together with the European Reference Networks (ERNs), provides the missing operational layer required to implement the European Biotech Act across the full innovation pathway —from discovery to patient access.
ERDERA and the European Genomic Data Infrastructure have signed a Memorandum of Understanding to strengthen collaboration on secure cross-border access to genomic, clinical and other health-related data, supporting rare disease research and the development of personalised medicine in Europe.
In its first year, ERDERA has brought together 10 000 harmonised genomic and phenotypic datasets from unsolved rare disease cases across Europe, creating a secure, standardised and scalable resource.
ERDERA interviews Ronald Cornet, Professor of Medical Informatics at Amsterdam UMC (University of Amsterdam), leading research on health data semantics and standards—terminology systems, information modelling, and FAIR data principles
