Con motivo del día de las enfermedades raras y con el objetivo de dar voz en primera persona al mundo de la discapacidad y las necesidades especiales, el Foro de Asuntos Sociales del PP de Torrelodones, organiza una charla coloquio dedicada a las Enfermedades Raras. Participarán Dª. Nuria Pombó, presidenta de la Fundación Sindrome de West y Dª. Alicia Centenera, vicepresidenta de la Asociación Síndrome X Frágil quienes presentarán la realidad del día a día de los afectados y sus familias y las necesidades sociosanitarias de estas dos enfermedades raras, la primera de las cuales (SW) está considerada como una de las epilepsias más severas y de consecuencias mas graves de la infancia, y la s
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