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 Clnic 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
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IDIBAPS - Institut d'Investigacions Biomdiques August Pi i Sunyer