Each year, the Spanish Federation of Rare Diseases (FEDER), in coordination with the European Organization for Rare Diseases (EURORDIS) and the Iberia-American Alliance of Rare Diseases (ALIBER), hold an Awareness Campaign on the occasion of World Day of Rare Diseases, which takes place on February 28.
The large number of activities organized around it, means that the entire Campaign comprises the months of January, February and March, months in which the entire announcement and awareness activities are held.
It is developed throughout Europe, USA, Latin America, Canada and Asia. In our country, the campaign will take place throughout Spain, with special emphasis on the communities where FEDER has a delegation: Madrid, Catalonia, Andalusia, Extremadura, C. Valenciana, Murcia, Basque Country.
Under the denomination of rare diseases group more than 6000 different diseases. Despite the great diversity, they share common characteristics: they have a prevalence of less than 5 cases per 10,000 inhabitants, have a genetic origin in more than 80% of the cases, which are severe and degenerative, and in many cases limit the quality Life of the patient due to loss of autonomy. This is often associated with the isolation of the patient with a rare disease from the family.
The lack of medical-scientific knowledge about these diseases, causes a significant delay in their diagnosis and their approach to care, requires interdisciplinary and comprehensive care. In this sense, the role of the internist can be extremely important. For this reason, in 2010 the Group of Minority Diseases of the Spanish Society of Internal Medicine (SEMI) was set up. This group organizes annually a meeting, which this year is number VII and is held in Barcelona on 23 and 24 February.
Dr. Luis Hidalgo, Specialist in Especialista en Medicina Interna
Medical Director at HC Marbella
February 28, 2017
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