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The State Reference Center for the Care of People with Rare Diseases and their families (Believe) hosted from October 3 to 6 the Annual ECLIP meeting and the VII International Symposium of Lipodystrophies, training sessions whose purpose is to work for and for infrequent lipodystrophies .
This meeting brought together professional researchers from more than 30 countries and 50 families from Spain, the United States, Portugal, United Kingdom and Peru, mainly.
The meeting, supposed to the professionals of the sector a contribution of information «very valuable and direct allowing to enrich the knowledge of a very fast way.
The president of the Association of Relatives and People with Lipodystrophies (Aelip), Naca Eulalia Pérez de Tudela, said that this event is unique because there is no center - public or private - that brings together this number of experts who are working and who know so first hand the causes and development of lipodystrophies ».
Along the same lines, the doctor of the Hospital Complex of Santiago de Compostela, David Araujo-Vilar, president of the scientific committee of the meeting, added that it is vital for the union to obtain the response from the patients as well as to know their needs.
This is because "for the first time" the 'International Symposium of Lipodystrophies' - which reaches its seventh edition - coincides with the 'Annual EClip Metting 2019', a scientific conference in which health professionals showed a series of advances that have not yet They are public because this part of the day was held behind closed doors, although access to all the families that requested it was allowed.
Lipodystrophies are a set of diseases that are characterized by a loss of adipose tissue.
A common feature is the predisposition to suffer from diabetes, cardiovascular diseases, increased triglycerides or fatty liver.
The president of AELIP and the organizing committee, the totanera Naca Pérez de Tudela, wanted to emphasize that it is essential to work from «prevention, so they published last year a guide in which various experts from the world participated.
Thus, they have translated it into Spanish -originally it was in English- so that Primary Care doctors and specialists can turn to it.
In addition, the AELIP association with the collaboration of the Galician Health Service, the University of Santiago de Compostela and the unit of thyroid and metabolic diseases presented in an incomparable setting the LIPO-DDX application, in which the main connotation is «know, prevent and advance the diagnosis.
"Many of these patients have been detected lipodystrophy between the ages of 35 and 45 but they had symptoms from the age of fourteen."
However, it was not detected «due to the lack of training and knowledge of the health professionals who attended them.
And is that "what is not known is as if it did not exist."
In short, this international event has allowed both health professionals and researchers and the people and families affected by Lipodystrophies to be combined, giving them the opportunity to learn about the progress of this pathology research and meet the different researchers. of the world.
Source: AELIP
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