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The paper, and the accompanying Policy Brief, reviews progress achieved so far and presents EURORDIS vision of a mature European Reference Network system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment.
EuroBloodNet is led by Prof. Pierre Fenaux from Ht St Louis in Paris and Prof Béatrice Gulbis from Ht ERASME-ULB- Cliniques universitarires de Bruxelles in Brussels.
EuroBloodNet Scientific Director, Dr Maria del Mar Mañú Pereira, IT and dissemination manager, Ms Victoria Gutierrez Valle, both from University Hospital Vall d'Hebron - Vall d'Hebron Research Institute in Barcelona and ERN manager, Mariangella Pellegrini, from Ht St Louis complete EuroBloodNet coordination team.
Methodological approach of EuroBloodNet has been shaped in accordance with ongoing EU activities to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens. Our efforts to improve the delivery of cross-border care to RHD patients will be undertaken in accordance with the Directive on Cross-Border Healthcare (2011/24/EU).
Five main Transversal Fields of action (TFA) has been established to implement annual work plan aiming to achieve EuroBloodNet goals. Each TFA is led by one oncological hub coordinador, one non-oncological hub coordinator and one European Patients Advocacy Group (ePAG) representative coordinator:
TFA on cross-border health aims to establish a referral system for patients and samples in order to ensure the same level of access to healthcare across Europe.
TFA 1 is coordinated by Prof. Jane Apperley (Imperial college Healthcare NHS Trust, London, UK) for the oncological hub, Prof. Raffaella Colombatti (AOU Padua, Padua, IT) for the non-oncological hub, and Ananda Plate (Myeloma Patients Europe) for the ePAGs representatives.
TFA on best practices aims to compile, create, and assess their implementation, alongside disseminating guidelines in RHD.
TFA 2 is coordinated by Prof. Luca Malcovati (Foundation IRCCS Polyclinic San Matteo, Pavia, IT) for the oncological hub, Prof Achille Iolascon (AOU Federico II, Naples, IT) for the non-oncological hub, and Amanda Bok (European Haemophilia Consortium) for the ePAGs representatives.
TFA on CME aims to spread cutting-edge knowledge and facilitate continuous medical education in the field of RHD.
TFA3 is coordinated by Prof. Dominique Bron (Jules Bordet Institute, Brussels, BE) for the oncological hub, Prof. Patricia Aguilar-Martinez (CHU de Montpellier, Montpellier, FR) for the non-oncological hub, and Jan Geissler (Leukemia Patient Advocates Foundation and EUPATI) for the ePAGs representatives.
TFA on Tele-medicine aims to facilitate inter-professional consultation by sharing of expertise and safety exchange of clinical information.
TFA4 is coordinated by Prof. Andreas Engert (Universitätsklinikum Köln, Köln, DE) for the oncological hub, Prof. Béatrice Gulbis (ERASME-ULB-CUB, Brussels, BE) for the non-oncological hub, and Sophie Wintrich (MDS UK Patient Support Group and MDS Alliance) for the ePAGs representatives.
TFA on Clinical Trials and Research aims to foster European cooperation for epidemiological surveillance, development of high specialized procedures for diagnosis, innovative treatments and research.
TFA5 is coordinated by Prof. Matteo della Porta (IRCCS Clinical Institute Humanitas, Rozzano, IT) for the oncological hub, Prof. Antonio Piga (AOU S.Luigi Gonzaga, Torino, IT), and Angelo Loris Brunetta (Associazione Ligure Thalassemici Onlus) for the ePAGs representatives.