Navigation Links
Spain is leading the fight against rare anemias in Europe

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 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 ( 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.


Contact: lex Argem
IDIBAPS - Institut d'Investigacions Biomdiques August Pi i Sunyer

Related biology news :

1. The birds of Spain, in a digital ornithological encyclopedia
2. The first hyperspectral scanner in Spain
3. Universitat Autonoma de Barcelona researchers first to clone mice in Spain
4. Small rodents encourage the formation of scrubland in Spain
5. Perennial vegetation, an indicator of desertification in Spain
6. Study in Spain and Romania confirms radon as second leading cause of lung cancer
7. The largest bat in Europe inhabited northeastern Spain more than 10,000 years ago
8. Waste could generate up to 7 percent of electricity in Spain
9. A new fossil species found in Spain
10. Exotic plant takes over dunes of Southern Spain
11. Ozone levels tend to be above recommended levels at this time of year in South West Spain
Post Your Comments:
(Date:11/18/2015)... 18, 2015  As new scientific discoveries deepen our ... other healthcare providers face challenges in better using that ... In addition, as more children continue to survive pediatric ... and old age. John M. Maris, M.D ... of Philadelphia (CHOP) . --> John ...
(Date:11/17/2015)... 2015 Pressure BioSciences, Inc. (OTCQB: PBIO) ("PBI" ... sale of broadly enabling, pressure cycling technology ("PCT")-based sample ... announced it has received gross proceeds of $745,000 from ... (the "Offering"), increasing the total amount raised to date ... closings are expected in the near future. ...
(Date:11/11/2015)... MINNETONKA, Minn. , Nov. 11, 2015   MedNet ... the entire spectrum of clinical research, is pleased to announce ... Partnerships in Clinical Trials (PCT) event, to be held ... will be able to view live demonstrations of ... platform, and learn how iMedNet has been able ...
Breaking Biology News(10 mins):
(Date:11/24/2015)... ... November 24, 2015 , ... This fall, global software solutions leader ... five states to develop and pitch their BIG ideas to improve health and wellness ... competing for votes to win the title of SAP's Teen Innovator, an all-expenses paid ...
(Date:11/24/2015)... Nov. 24, 2015  Tikcro Technologies Ltd. (OTCQB: TIKRF) today announced that ... 2015 at 11:00 a.m. Israel time, at the ... Yigal Allon Street, 36 th Floor, Tel Aviv, Israel ... Paneth and Izhak Tamir to the Board of Directors; ... external directors; , approval of an amendment to certain terms of ...
(Date:11/24/2015)... ... November 24, 2015 , ... InSphero AG, the leading supplier of ... has promoted Melanie Aregger to serve as Chief Operating Officer. , Having ... management team and was promoted to Head of InSphero Diagnostics in 2014. ...
(Date:11/24/2015)... , Nov. 24, 2015 HemoShear ... on discovering drugs for metabolic disorders, announced today ... to its Board of Directors (BOD). Mr. Watkins ... of Human Genome Sciences (HGS), and also served ... Jim Powers , Chairman and CEO ...
Breaking Biology Technology: