1. Dr. Joan Lluis Vives-Corrons Head of ENERCA project Head of the Red Cell Pathology Unit Hospital Clínic - IDIBAPS of Barcelona “ Rare Diseases a model of EU Solidarity” 10 YEARS OF LIFE 2002-2012

2. You feel ill… Visit your doctor… The doctor does some tests… …and says: you have anaemia! The doctor prescribes iron pills… ¿Why ENERCA ?

3. With the RIGHT DIAGNOSIS you feel better ENERCA 2012

4. KNOWLEDGE DATABASE BEST PRACTICE PATIENT’S EMPOWER MENT How ENERCA reduces Health Inequalities?

5. Recommendations Clinical Patient care

6. Training courses

7. European Symposium on Rare Anaemias

8. Moving forward to the creation of a European Reference Network (ERN) of Expert Centres on Rare Anaemias ENERCA WHITE BOOK THE FUTURE: Networking

9. Second opinion / Interprofessional support Case manager Diagnostic orientation Experts Experts information Medical Advice ENERCA has tools and experts for a better diagnosis… Why not sharing knowledge and expertise ? THE FUTURE: Telemedicine and Telediagnosis MEDICAL ADVICE Diagnosis

10. Collaboration with KNOWLEDGE MEDICAL ADVICE NEW TRENDS THE FUTURE: Research

11. coordinate and foster research The Biomedical Network Research Centre on Rare Diseases (CIBERER) is one of the 9 public consortiums set up at the initiative of the Carlos III Health Institute (ISCIII)-Ministry of Science and Innovation, to act as a reference to coordinate and foster research into Rare Diseases in Spain. Why CIBERER? The knowledge generated is translated from the laboratory to clinical practice Translational Research Mission

12. 60 Research Groups 29 Consorted Institutions innovative network structure: Universities, Hospitals, Research Centers thanks to CIBERER have created an innovative network structure: offers opportunities of research actions and public-private collaboration Cooperative Research in RD The centre encloses clinical and basic researchers promoting Cooperative Research in RD Network Structure

13. ¡THANK YOU! Enerca Coordination Team Head of Project - J.L. Vives Corrons (jl.vives@enerca.org) Project Manager - María del Mar Mañú Pereira (maria.manu@enerca.org) Project Assistant - Laura Olaya Costa (laura.olaya@enerca.org)jl.vives@enerca.orgmaria.manu@enerca.orglaura.olaya@enerca.org Red Cell Pathology Unit Hospital Clinic i Provincial University of Barcelona c/ Villarroel 170 080036-Barcelona Phone: +34 934515950 www.enerca.org www.enerca.org