ERN-EuroBloodNet in Padua: two days of collaboration on networks and data

Co-Coordinator Dr María del Mar Mañú Pereira met representatives of 22 ERNs and spoke at the SYNTHEMA final event

This week, our Co-Coordinator Dr María del Mar Mañú Pereira spent two days in Padua, Italy, taking part in two events on European cooperation in rare diseases.

On Monday, she joined a meeting at Azienda Ospedale-Università Padova that brought together representatives of 22 European Reference Networks. Mar presented the ERNs, the HLM4Rare initiative and other ongoing activities. The meeting was a chance to share experience and strengthen collaboration across the networks.

On Tuesday, she took part in the SYNTHEMA final dissemination event, hosted by the University of Padua. The event was titled "Building on Real-World Data: Federated Learning, Synthetic Data and the Future of Data-driven Medicine". Mar gave the talk "Rare Hematological Diseases in Europe: Networks, Registries and the Challenge of Data Sharing". She explained how ERN-EuroBloodNet, together with interoperable, quality-controlled registries under the ENROL umbrella, makes it possible to pool expertise and data across borders.

When patients are few and data is scattered across countries, collaboration is not optional. It is the only way forward.

We thank the AO di Padova, Dr Raffaella Colombatti and Elisabetta Mezzalira for hosting, and all 16 SYNTHEMA partners for a great collaboration.