Sevilla: Consejería de Salud de la Junta de Andalucía, 2008.). Plan de atención a personas afectadas por enfermedades raras. GONZÁLEZ-MENESES et al., 2008 GONZÁLEZ-MENESES LÓPEZ, A.
Enfermedades raras: situación y demandas sociosanitarias. Paradoxically, as a whole, those affected by these ailments constitute a large group, but have been practically invisible until just a decade ago ( MATEO, 2001 MATEO, V. (Advances in Experimental Medicine and Biology, v.686).) is provided. Consequently, not enough information on the care and treatment that can improve the quality of life of these people ( POSADA DE LA PAZ GROFT, 2010 POSADA DE LA PAZ, M. Madrid: Loquenoexiste, 2009.).įurthermore, being so rare, they have the disadvantage of an unknown etiology resulting in disorientation in the diagnostic process, late or absent in most cases. Manual de humanidad para encontrar las claves de la felicidad. Therefore, there would be three million people with this problem in Spain ( ENFERMEDADES RARAS, 2009 ENFERMEDADES RARAS. The percentage of population affected by these ailments is estimated at about 7 %. It is further estimated that there may be somewhere between six and eight thousand diseases of this kind, many of them of genetic origin and chronic nature.
Rare pathologies are considered to be those whose prevalence rate is less than five per ten thousand inhabitants (EUROPEAN COMMISSION, 2008). The study of less prevalent pathologies, in its various approaches, is gaining prominence in recent years this is mainly due to the activities of the Federación Española de Enfermedades Raras ( FEDER).
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