Centres of Expertise and European Reference Networks: key issues in the field of rare diseases. The EUCERD Recommendations

• Published in: Blood transfusion = Trasfusione del sangue Vol. 12 Suppl 3; no. Suppl 3; pp. s621 - s625
• Main Authors: Taruscio, Domenica, Gentile, Amalia E, Evangelista, Teresinha, Frazzica, Rosa G, Bushby, Kate, Montserrat, Antoni Moliner
• Format: Journal Article
• Language: English
• Published: Italy Edizioni SIMTI - SIMTI Servizi Srl 01.04.2014
• Subjects: Community Networks; Congresses as Topic; Delivery of Health Care; Education; Europe - epidemiology; Female; Humans; Male; Practice Guidelines as Topic; Rare Diseases - epidemiology; Rare Diseases - therapy; Regional, National and European actions in the field of Rare Diseases; Europe
• ISSN: 1723-2007; 2385-2070
• DOI: 10.2450/2014.0026-14s

Rare diseases, because of their intrinsic characteristics - large number of disorders and syndromes, low individual prevalence, severity, often limited information, lack of therapies - can benefit from collaboration and sharing of expertise while maximising the limited resources available for these conditions. Therefore, the development of Centres of Expertise (CEs) and European Reference Networks (ERNs) in this field is crucial.The European Union Committee of Experts on Rare Diseases (EUCERD) has been charged to assist the European Commission with the preparation and implementation of activities in the field of rare diseases in Europe. In particular, EUCERD has assisted the EC in drawing up the recommendations issued in the Commission Communication and in the Council Recommendation. In this paper the authors focus on the EUCERD Recommendations on CEs and one on ERNs. Recommendations on CEs and ERNs are the result of two different processes, developed through iterative reviews and discussions at workshops and EUCERD meetings, and according to the European Union documents. EUCERD has issued two complementary Recommendations, one on CEs (2011) and a second on ERNs (2013). Both address multiple targets (from Member States to Centres, and patient organisations), with the objective of helping them define and organise CEs and ERNs. The establishment, designation, financial support, and evaluation of CEs throughout Europe allow RD patients and local health care providers to identify high-quality specialised services that can simplify disease management and improve patients' care. The EUCERD Recommendations are useful instruments to help and guide stakeholders in the development of CEs and ERNs and thus ensure equity of access to services and care for rare diseases patients across Europe.