ERDERA’s third General Assembly brought partners together in Coimbra to review its second year, strengthen connections across the partnership and align priorities for a more integrated and delivery-focused third year.
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.
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.
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.
