Las enfermedades raras son aquellas que tienen una baja incidencia en la población. Para ser considerada como rara, cada enfermedad específica sólo puede afectar a un número limitado de personas. Concretamente, cuando afecta a menos de 5 de cada 10.000 habitantes.
Sin embargo, las patologías poco frecuentes afectan a un gran número de personas, ya que según la Organización Mundial de la Salud (OMS), existen cerca de 7.000 enfermedades raras que afectan al 7% de la población mundial. En total, se estima que en España existen más de 3 millones de personas con enfermedades poco frecuentes.
Por esta razón, cualquier persona puede sufrir una patología poco frecuente, en cualquier etapa de la vida.
Las Enfermedades Raras en cifras
La Federación Española de Enfermedades Raras (FEDER) y Obra Social Caja Madrid publicaron en 2009 el Estudio de Necesidades Sociosanitarias de las personas con enfermedades raras en España (Estudio ENSERio). Este pionero informe arroja por primera vez datos científicos sobre la verdadera situación a la que cada día se enfrentan las familias que tienen una enfermedad poco frecuente.
El Estudio ENSERio pone sobre la mesa una sencilla imagen: los afectados por enfermedades raras son peregrinos, viajeros permanentes en busca de un diagnóstico y tratamiento. Estas familias sufren de forma crónica las grandes dificultades de su enfermedad, agravadas por la escasez de dispositivos de ayuda, específicos para su patología. El estudio marca, por tanto, un hito al recoger por primera vez datos respecto al diagnóstico, atención sociosanitaria, apoyos y asistencia por motivo de discapacidad, inclusión social y laboral del colectivo, así como percepción de su situación actual.
Documental: Enfermedades raras
A continuación os trasladamos los datos más relevantes del Estudio ENSERIo:
ESTUDIO ENFERMEDADES RARAS
Servicio de Orientación de enfermedades raras 902 18 17 25
FUENTE: FEDERACIÓN ESPAÑOLA DE ENFERMEDADES RARAS / TRAZOS 2013
Trazos Digital 
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