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ENERCA will pioneer the design of e-Health tools in rare anaemias for patients and experts

The Kick-off Meeting of e-ENERCA was held on October 14th in Luxemburg

October 16 2013

ENERCA

The European Network for Rare and Congenital Anaemias (ENERCA) is a project funded by the European Commission through the Executive Agency for Health and Consumers (EAHC). e-ENERCA is the result of three previous phases (ENERCA 1, 2 and 3) that have been successfully developed during the last decade (2002-2012). During the next three years it will develop modern e-Health tools for a better management and knowledge of rare anaemias.

As the previous phases of the project, e-ENERCA is coordinated by Prof. Joan-Lluis Vives Corrons, Head of the Red Cell Pathology Unit at the Hospital Clínic of Barcelona, and it pursues the consolidation of a European Reference Network in rare anaemias and focuses in professionals as well as in patients and their families. Coordinated from the Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), the research Institute participated by the Hospital Clínic of Barcelona (Catalonia, Spain), e-ENERCA joins the efforts of 26 expert centers in rare anaemias from 11 European countries. The Kick-off Meeting of e-ENERCA was held on October 14th in Luxemburg.

Rare anaemias are rare diseases with prevalence in Europe under 5 cases per 10.000 individuals. Major forms require red blood cell transfusions and iron chelating therapy as main therapeutic options. Preventive programs aiming to epidemiological control and a better diagnosis and clinical management of major rare anaemias are crucial for decreasing the affected birth rate and achieving an efficient balance between disease morbidity and patient’s life capacity. 1% of couples are at risk of having a newborn with a severe syndrome of haemoglobin, and over 330,000 children are born worldwide each year affected by one of these diseases, being the most common disorders sickle cell anemia and thalassemia syndromes. One of the most important aspects in the fight against rare diseases is the cooperation between countries, and here is where ENERCA is making a difference.

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