El Parlamento Europeo ha anunciado que relanzarán su "Red de Defensores Parlamentarios de Enfermedades Raras". Su objetivo es crear un nuevo marco de políticas que pueda mejorar la atención y…
Nosotroscreemos que lospacientes de enfermedadesraras son personas, no undiagnóstico. A través de la educación, conciencia, y unpoco de humor – ayudamospacientes, suscuidadores y simpatizantesbrindándolesnoticias e historiasrelevantesya menudo inspiradoras.
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