The 3rd ERN-EuroBloodNet Board of Network meeting was held last 13 and 14 November in Vall d’Hebron University Hospital, Barcelona, with the participation of more than 80 attendants. The audience included member representatives, patients’ organizations, candidates for new members, affiliated partners and collaborating stakeholders as the European Hematology Association (EHA), the European School of Hematology (ESH) or International Quality Expertise (UKNEQAS).
The meeting started with a Plenary Session and Round table on European Reference Networks (ERNs) Consolidation & Sustainability. The Plenary included an overview of the impact of ERNs at hospital level and national health systems by Yolima Cossio (Director of Information Systems in Vall d’hebron Barcelona Hospital Campus), the ERNs consolidation and long term sustainability by Enrique Terol (DG SANTE – European Commission) and the European Joint Programme (EJP) on Rare diseases and its links to ERNs by Claudio Carta (EJP WP 14 leader).
In addition, on this occassion the meeting counted with two Parallel Session, focussed on Cross Border Health, interprofessional consultations and webinars program, and on registries, clinical trials, best practices and patients actions. During the sessions, the main actions and results implemented by the network were presented by the projects coordinators: Pierre Fenaux, Béatrice Gulbis, María del Mar Mañú Pereira, Raffaella Colombatti, Patricia-Aguilar Martínez, Dominique Bron, Barbara de la Salle (UKNEQAS), Luca Malcovati, Mariangela Pellegrini and Ariane Weinman (EURORDIS).
In addition, an overview of the ERNs and members monitoring system including the set of indicators defined by the EC and ERNs WG on monitoring was provided by Victoria Gutierrez Valle, and an update on the ERNs WG on Guidelines and Research was given to the participants thanks to the attendance of Eduard van Beers to the meeting ERNs Coordinators Group meeting in Brussels, overlapping on the dates with the EuroBloodNet meeting.
After the ongoing actions presented, the audience was divided into working groups based on areas of expertise, in order to discuss in the Parallel Sessions the questions rised by the speakers and drivers of the sessions.
As a result of the Parallel Sessions, multiple new projects will be initiated in both, the oncological and non oncological rare hematological diseases side in a wide range of areas, as cross border health, webinars program and epidemiological survaillance. An outcomes document will be disseminated including the main points discussed and topics arisen during the meeting.
THANKS to all for your fruitful participation and valuable contributions!