Alrededor del mundo se cuentan entre 6.000 y 8.000 enfermedades huérfanas/raras que afectan al 8% de la población. La mayoría son de origen genético y muestran sus primeros signos en la infancia, avanzando progresivamente en el ciclo de vida.
Con el paso del tiempo, estas particularidades han sido los promotores de organizaciones sociales como la Federación Colombiana de Enfermedades Raras –FECOER, en el que los pacientes, sus familiares y especialistas toman la vocería y reúnen esfuerzos para eliminar barreras de acceso a los diagnósticos, tratamientos; educar a los colombianos sobre estas patologías y convocar nuevas acciones que involucren a varios sectores.
También le puede interesar: 28 de febrero día mundial de las enfermedades huérfanas/raras: raro es no conocerlas
Entrevista con FECOER sobre los avances en enfermedades raras:
No olvide leer: Costo de enfermedades raras es 10 veces superior en los sistemas de salud
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