Madrid, Friday November 19th, 2010. It is estimated that rare diseases -those whose frequency is under 5 cases / 10,000 people- affect about 6% of the European population. In the field of anemia, 1% of couples are at risk of having a newborn with a severe syndrome of hemoglobin. More than 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. In Spain, the average risk of having a newborn with a rare or unusual anemia is being increased due to African immigration. However, Spain is working on that issue and is the fifth of the 27 member countries that has developed a Strategic plan for rare diseases. It has been emphasized by European Commission sources during the 3rd European Symposium organized by ENERCA at the Cosmocaixa Madrid.
ENERCA European project (European Network for Rare and Congenital Anaemia) is, to date, the European reference network for the study of rare anemias. Since its inception in 2002, this initiative has uncovered a gap in the field of these diseases. However, misinformation and lack of institutional commitment forces professionals and affected patients to work closely. In fact, this is the first time that health professionals and patients join efforts in Spain in the fight against rare anemias. During a press meeting, Dr. Joan Lluis Vives-Corrons, head of the Anemia Unit at the Hospital Clínic of Barcelona and director of ENERCA, Mr. Antonio Cerrato, president of ALHETA (Spanish Association for the Control of Hemoglobinopathies and thalassemias), Mr. Antoni Montserrat, European Commission representative for the study of rare diseases, and Dr. Patricia Aguilar-Martinez, member of the World Health Organization, discussed the current situation of these diseases, and the main demands to improve the quality of life of patients.
Due to the small number of cases, one of the most important aspects in the fight against rare diseases is the cooperation between countries. Establishing a national plan to fight these diseases in the European Union framework is essential for knowledge management of each disease and improving public health in general. The Spanish strategy in the case of anemia is exemplary with initiatives such as the ENERCA European network, a project that brings together all the actors involved in the study and treatment of rare blood diseases: national and international institutions, medical professionals, researchers, associations and affected patients, etc … have gathered today in Madrid to claim that there is still a long way ahead.
The primary objective of ENERCA (www.enerca.org) is to establish a network of close contacts for disseminating the latest developments in all kinds of rare anemias, both inherited (congenital) and not inherited (acquired). It aims to help those patients who suffer, their families and their caregivers, trying to offer clear, reliable and useful information for a correct diagnostic approach. The project has been funded with 1.2 million Euros by the European Commission in its third phase of development (2009-1012). Congress held between 19 and 20 November in the Cosmocaixa de Madrid (Alcobendas) is another example of how networking is promoted from ENERCA.