{"id":4888,"date":"2019-11-26T09:29:56","date_gmt":"2019-11-26T09:29:56","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/11\/26\/formamos-parte-de-la-vii-jornada-somos-pacientes\/"},"modified":"2019-11-26T09:29:56","modified_gmt":"2019-11-26T09:29:56","slug":"formamos-parte-de-la-vii-jornada-somos-pacientes","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/11\/26\/formamos-parte-de-la-vii-jornada-somos-pacientes\/","title":{"rendered":"Formamos parte de la VII Jornada Somos Pacientes"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Acudimos a la VII Jornada Somos Pacientes que se celebra en el Espacio Bertelsmann. Esta cita llev\u00f3 por t\u00edtulo \u2018Nuevos pacientes, nuevas necesidades\u2019 se posiciona como una de los principales actos en el movimiento asociativo y por ello, desde FEDER no nos quisimos perder este encuentro, por ello, la Responsable de Investigaci\u00f3n, Patricia Arias, participar\u00e1 en la VII Jornada.<\/p>\n<p>El programa cont\u00f3 con charlas y coloquios sobre temas de gran inter\u00e9s para el movimiento asociativo en los que participan, adem\u00e1s de representantes de las organizaciones de pacientes, profesionales sanitarios, miembros de la administraci\u00f3n y portavoces de la industria farmac\u00e9utica.<\/p>\n<p>FEDER estuvo presente en el coloquio \u2018Nuevos Pacientes, nuevo sistema sanitario\u2019 donde tuvimos la oportunidad de recordar la transversalidad entre lo sanitario y lo social, pues es fundamental un trabajo en com\u00fan para abordar las enfermedades poco frecuentes. Adem\u00e1s, trasladamos la importancia del paciente en todos los procesos vinculados a las patolog\u00edas poco frecuentes, desde el diagn\u00f3stico, investigaci\u00f3n y tratamiento.<\/p>\n<p>La Jornada incluy\u00f3 tambi\u00e9n el acto de entrega de la quinta edici\u00f3n de los Premios Somos Pacientes, donde se reconoci\u00f3 las actividades y proyectos m\u00e1s destacados puestos en marcha por las asociaciones en el \u00faltimo a\u00f1o. Este acto cont\u00f3 con la presencia de la ministra de Sanidad, Consumo y Bienestar Social, Mar\u00eda Luisa Carcedo.<\/p>\n<p><span style=\"font-size: 12pt\">Conoce m\u00e1s sobre Somos Pacientes<\/span><\/p>\n<p>Somos Pacientes es una iniciativa participativa, social y sin \u00e1nimo de lucro de la Fundaci\u00f3n Farmaindustria que re\u00fane ya a m\u00e1s de 1.800 organizaciones de pacientes, personas con discapacidad, familiares y cuidadores, una activa comunidad que comparte informaci\u00f3n y servicios.<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13292-formamos-parte-de-la-vii-jornada-somos-pacientes\" target=\"_blank\" rel=\"noopener noreferrer\">Formamos parte de la VII Jornada Somos Pacientes<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Acudimos a la VII Jornada Somos Pacientes que se celebra en el Espacio Bertelsmann. Esta cita llev\u00f3 por t\u00edtulo \u2018Nuevos pacientes, nuevas necesidades\u2019 se posiciona como una de los principales actos en el movimiento asociativo y por ello, desde FEDER no nos [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-4888","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Formamos parte de la VII Jornada Somos Pacientes - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2019\/11\/26\/formamos-parte-de-la-vii-jornada-somos-pacientes\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Formamos parte de la VII Jornada Somos Pacientes - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Acudimos a la VII Jornada Somos Pacientes que se celebra en el Espacio Bertelsmann. 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