Introduction

1. White Book 1. 1. Analizing Analizing the the current current 2. 2. Discussing Discussing the the 3. 3. Establishing Establishing the the situation situation … … reports reports … … consensus consensus criteria criteria … … Legal Legal analysis analysis - - WP1 WP1 Legal Legal analysis analysis - - WP1 WP1 Legal Legal and and ethical ethical Questionnaire Questionnaire for for centres draft draft criteria criteria European European Comparative Comparative legal legal analysis analysis Report Report Joint Joint consensus consensus criteria criteria proposal proposal Technical Technical analysis analysis - - WP2, WP4, 5 & 6 WP2, WP4, 5 & 6 Technical Technical analysis analysis - - Moving forward the creation of aEuropean Reference Network (ERN)of Expert Centres on Rare Anaemias WP4, 5 & 6 WP4, 5 & 6 Questionnaire Questionnaire for for centers centers and and labs labs Technical Technical draft draft criteria criteria Report Report by by diseases diseases cathegory cathegory Patients Patients ’ ’ Community Community - - WP5 WP5 Patients Patients community community - - WP5 WP5 Questionnaire Questionnaire for for patients patients Patients Patients ’ ’ expectations expectations Report Report on on patients patients ’ ’ expectations expectations on on Expert Expert centres centres The ENERCA White Book for the Creation of a European Reference Network of Expert Centres on Rare Anaemias María del Mar Mañú Pereira 1, Laura Olaya Costa 1,Juan LLuis Vives Corrons 1, Béatrice Gulbis 2,Pilar Nicolás3 Carlos Romeo3, 1Unidad de Eritropatología. Hospital Clínic de Barcelona. 2 Erasme Hospital- Université Libre de Bruxelles . 3 Universidad de Deusto On behalf ENERCA Consortium • Introduction • ENERCA (European Reference Network for Rare and Congenital Anaemias) is a Project co-financed by the DG-SANCO/ Executive Agency for Health Consumers (EAHC) since 2002 aiming to improve the quality of life of patients suffering from Rare Anaemias (RA). The main objective of ENERCA is the establishment of the consensus recommendations for the recognition of the Expert Centres (EC) in RA across the EU with the aim of create a European Reference Network of EC on RA. E N E R C A With the right diagnosis, you feel better! • Methodology centres • Results • ENERCA White Book allows to obtain a broad picture of the existing EC on RA in Europe. Access to EC and expertise throughout the European Member States (MS)for both patients and health professionals, independently of the country of origin or practice, reduces inequalities. • The White Book also facilitates epidemiological surveillance throughout EU by gathering comparable data on patients affected by RA and allowing the implementation of preventive programme for tackling RA and promotion of best practices for prevention, diagnosis and clinical management. • Conclusions • ENERCA White Book constitutes, as added value, a pilot experience for other rare diseases networking in Europe. Ideally, National Authorities should be aware of the recommendations established by ENERCA, and published in the White Book, for the definition of national EC on RA. With ENERCA …. Rare Anaemias are not so Rare! We also invite you to visit our website! www.enerca.org Contact details: Phone: +34 934515950 E-mail: enerca@enerca.org