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El Senado presentará una moción de apoyo a las enfermedades raras

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La totalidad de los grupos parlamentarios del Senado presentará una moción para apoyar a las personas con enfermedades raras, que será aprobada en el Pleno del próximo 23 de febrero. Así lo han confirmado hoy en Madrid varios senadores durante la presentación de la campaña Por la igualdad de oportunidades para las personas con enfermedades poco frecuentes.

“Vamos a presentar una moción apoyada por todos los grupos de la Cámara”, ha asegurado Pedro Villagrán, portavoz del PSOE en la Comisión de Sanidad del Senado. El texto servirá para apoyar a las personas con enfermedades raras y será aprobado en el pleno del 23 de febrero, según Ignacio Burgos, portavoz del PP en la Comisión.

La campaña Por la igualdad de oportunidades para las personas con enfermedades poco frecuentes, presentada en la Cámara Alta y organizada por la Federación Española de Enfermedades Raras (FEDER), arranca hoy y finaliza el 3 de marzo. En total aglutinará más de 100 actos en España.

“Necesitamos que haya una igualdad de oportunidades real y eficaz para los afectados en todos los ámbitos”, ha señalado Isabel Calvo, presidenta de la FEDER. Para ello, Calvo ha pedido que aumente el número de centros, servicios y unidades de referencia que apoyan a los tres millones de enfermos que sufren estas patologías en todo el país.

“La calidad de vida varía mucho en función de la comunidad autónoma”, ha explicado Íñigo Ibarrondo, afectado de epidermolisis bullosa, una enfermedad conocida como “piel de mariposa”. El joven ha recordado que sus padres llegaron a gastarse 2.000 euros al mes en sus cuidados y se ha lamentado de la lentitud burocrática con la que chocan cada día todos los enfermos.

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