La Princesa de Asturias preside el Acto Oficial del Día Mundial de las Enfermedades Raras


Mañana viernes 8 de marzo tendrá lugar en el Senado, el Acto Oficial de celebración del Día Mundial de las Enfermedades Raras. Su Alteza Real la Princesa de Asturias presidirá una ceremonia organizada por FEDER y cuyo objetivo es “poner de manifiesto la realidad de los tres millones de personas con enfermedades poco frecuentes y trasladar su realidad, sus dificultades y sus necesidades ante las principales autoridades políticas españolas”.

La Princesa Letizia

La Princesa Letizia

Además se realizará la entrega de los Premios FEDER a personas y entidades que han dado su apoyo durante el último año a las personas con enfermedades raras. Este acto constituye el broche final de la Campaña del Día Mundial de las enfermedades raras que se ha llevado a cabo por toda España durante el mes de febrero con diversos eventos de carácter benéfico. Entre otros, la reciente Carrera de la Esperanza, que contó con la colaboración y el patrocinio de AAMADE y la Clínica Ortoface.

El acto, contará además con la presidencia de Pío García Escudero, presidente del Senado y con Pilar Farjas, Secretaria General de Sanidad y Consumo. En representación de la Asociación de Anomalías y Malformaciones Dentofaciales, acudirá Rubén Martínez, responsable de Relaciones Externas y Calidad de la Clínica Ortoface.

Durante la ceremonia se realizará la lectura de dos testimonios de personas con patologías poco frecuentes quienes contarán a los asistentes su peregrinaje por la geografía española hasta encontrar un diagnóstico a su enfermedad. Por último, se realizará la lectura del manifiesto oficial del Día Mundial en donde se plantearán las 13 propuestas prioritarias para 2013.

 

 

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