Navigation Links
Spain is leading the fight against rare anemias in Europe
Date:11/19/2010

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 (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.


'/>"/>

Contact: lex Argem
aargemi@clinic.ub.es
0034-932-275-700
IDIBAPS - Institut d'Investigacions Biomdiques August Pi i Sunyer
Source:Eurekalert

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:
*Name:
*Comment:
*Email:
(Date:3/31/2016)... 2016  Genomics firm Nabsys has completed a financial ... Bready , M.D., who returned to the company in ... leadership team, including Chief Technology Officer, John Oliver ... Nurnberg and Vice President of Software and Informatics, ... Dr. Bready served as CEO of Nabsys from ...
(Date:3/23/2016)... , March 23, 2016 ... erhöhter Sicherheit Gesichts- und Stimmerkennung mit Passwörtern ... (NASDAQ: MESG ), ein führender ... das Unternehmen mit SpeechPro zusammenarbeitet, um erstmals ... Finanzdienstleistungsbranche, wird die Möglichkeit angeboten, im Rahmen ...
(Date:3/22/2016)... , PROVO and ... Newborn Screening Ontario (NSO), which operates the highest sample ... molecular testing, and Tute Genomics and UNIConnect, leaders in ... respectively, today announced the launch of a project to ... (NGS) testing panel. NSO has been ...
Breaking Biology News(10 mins):
(Date:5/27/2016)... ... May 27, 2016 , ... Weeks after hosting a carpal ... Dr. Michael Fitzmaurice, hand surgeon and founder of the Fitzmaurice Hand Institute, has announced ... MRI machine is a state-of-the-art technology and only 1 of about 3 currently available ...
(Date:5/26/2016)... 26, 2016  Agriculture nutrients are in the news ... is running their nitrate removal system on ... and coastal regions nationwide are painting the ... widespread issue. NECi Superior Enzymes, a biotechnology ... developed a new, easy to use device that fits ...
(Date:5/26/2016)... CA (PRWEB) , ... May 26, 2016 , ... ... and manufacturing company, today announced several positive developments that position the Company for ... a result of the transaction, Craig F. Kinghorn has been appointed Chairman of ...
(Date:5/25/2016)... ... May 25, 2016 , ... ... recently became double board-certified in surgery and surgery of the hand by the ... is no stranger to going above and beyond in his pursuit of providing ...
Breaking Biology Technology: