{"id":5278,"date":"2020-02-24T11:11:13","date_gmt":"2020-02-24T11:11:13","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/02\/24\/sumate-al-dia-mundial-de-las-enfermedades-raras-con-eurordis\/"},"modified":"2020-02-24T11:11:13","modified_gmt":"2020-02-24T11:11:13","slug":"sumate-al-dia-mundial-de-las-enfermedades-raras-con-eurordis","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/02\/24\/sumate-al-dia-mundial-de-las-enfermedades-raras-con-eurordis\/","title":{"rendered":"\u00a1S\u00famate al D\u00eda Mundial de las Enfermedades Raras con EURORDIS!"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>Solo quedan cinco d\u00edas para el D\u00eda Mundial de las Enfermedades Raras y desde EURORDIS te dan la oportunidad de colaborar con ellos en esta jornada tan importante para el colectivo de personas que conviven con patolog\u00edas poco frecuentes y sus familiares.&nbsp;<\/p>\n<p>\u00bfC\u00f3mo me puedo adherir?&nbsp;<\/p>\n<p>EURORDIS te ofrece varias f\u00f3rmulas para que te puedas sumar a este d\u00eda como:&nbsp;<\/p>\n<p>&#8211;<span> <\/span>Descarga el material del D\u00eda Mundial en su p\u00e1gina y contribuye a la difusi\u00f3n<\/p>\n<p>&#8211;<span> <\/span>Si quieres que tu entidad forme parte de este D\u00eda Mundial,&nbsp; puedes convertirte en amigo pasando a formar parte de esta gran familia a trav\u00e9s de <a href=\"https:\/\/www.rarediseaseday.org\/become-a-friend\/\" target=\"_blank\" rel=\"noopener noreferrer\">este formulario<\/a><\/p>\n<p>&#8211;<span> <\/span>Env\u00eda tus fotos&nbsp;&nbsp;<\/p>\n<p>&#8211;<span> <\/span>Traslada tu testimonio<\/p>\n<p>&#8211;<span> <\/span>Cada a\u00f1o se organizan miles de eventos en todo el mundo durante el mes de febrero para conmemorar el D\u00eda de las Enfermedades Raras que se publican en la p\u00e1gina web de esta organizaci\u00f3n<\/p>\n<p>\u00bfQu\u00e9 es el d\u00eda mundial de las enfermedades raras?<\/p>\n<p>El objetivo principal de este d\u00eda es aumentar la conciencia entre el p\u00fablico en general y los tomadores de decisiones sobre las enfermedades raras y su impacto en la vida de los pacientes. La sensibilizaci\u00f3n de las enfermedades raras es tan importante ya que 1 de cada 20 persona van a vivir con una enfermedad raraen alg\u00fan momento de su vida. A pesar de esto, no existe cura para la mayor\u00eda de enfermedades raras y muchos no son diagnosticados.&nbsp;<\/p>\n<p>\u00daltima modificaci\u00f3n: 24\/2\/20<\/p>\n<p>&nbsp;<\/p>\n<div id=\"_mcePaste\" class=\"mcePaste\" data-mce-bogus=\"1\" style=\"width: 1px;height: 1px;overflow: hidden\">\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">Solo quedan cinco d\u00edas para el D\u00eda Mundial de las Enfermedades Raras y desde EURORDIS te dan la oportunidad de colaborar con ellos en esta jornada tan importante para el colectivo de personas que conviven con patolog\u00edas poco frecuentes y sus familiares. <\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">&nbsp;<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">\u00bfC\u00f3mo me puedo adherir? <\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">&nbsp;<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">EURORDIS te ofrece varias f\u00f3rmulas para que te puedas sumar a este d\u00eda como: <\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">&nbsp;<\/span><\/p>\n<p class=\"MsoListParagraphCxSpFirst\" style=\"text-indent: -18.0pt\"><!--[if !supportLists]--><span style=\"font-size: 12.0pt\"><span>&#8211;<span style=\"font: 7.0pt 'Times New Roman'\">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <\/span><\/span><\/span><!--[endif]--><span style=\"font-size: 12.0pt;background: white\">Descarga el material del D\u00eda Mundial en su p\u00e1gina y contribuye a la difusi\u00f3n<\/span><\/p>\n<p class=\"MsoListParagraphCxSpMiddle\" style=\"text-indent: -18.0pt\"><!--[if !supportLists]--><span style=\"font-size: 12.0pt\"><span>&#8211;<span style=\"font: 7.0pt 'Times New Roman'\">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <\/span><\/span><\/span><!--[endif]--><span style=\"font-size: 12.0pt;background: white\">Si quieres que tu entidad forme parte de este D\u00eda Mundial, <span>&nbsp;<\/span>puedes convertirte en amigo pasando a formar parte de esta gran familia a trav\u00e9s de este formulario<\/span><\/p>\n<p class=\"MsoListParagraphCxSpMiddle\" style=\"text-indent: -18.0pt\"><!--[if !supportLists]--><span style=\"font-size: 12.0pt\"><span>&#8211;<span style=\"font: 7.0pt 'Times New Roman'\">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <\/span><\/span><\/span><!--[endif]--><span style=\"font-size: 12.0pt;background: white\">Env\u00eda tus fotos <span>&nbsp;<\/span><\/span><\/p>\n<p class=\"MsoListParagraphCxSpMiddle\" style=\"text-indent: -18.0pt\"><!--[if !supportLists]--><span style=\"font-size: 12.0pt\"><span>&#8211;<span style=\"font: 7.0pt 'Times New Roman'\">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <\/span><\/span><\/span><!--[endif]--><span style=\"font-size: 12.0pt;background: white\">Traslada tu testimonio<\/span><\/p>\n<p class=\"MsoListParagraphCxSpLast\" style=\"text-indent: -18.0pt\"><!--[if !supportLists]--><span style=\"font-size: 12.0pt\"><span>&#8211;<span style=\"font: 7.0pt 'Times New Roman'\">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <\/span><\/span><\/span><!--[endif]--><span style=\"font-size: 12.0pt;background: white\">Cada a\u00f1o se organizan miles de eventos en todo el mundo durante el mes de febrero para conmemorar el D\u00eda de las Enfermedades Raras que se publican en la p\u00e1gina web de esta organizaci\u00f3n<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">&nbsp;<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">&nbsp;<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">\u00bfQu\u00e9 es el d\u00eda mundial de las enfermedades raras?<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">&nbsp;<\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt;background: white\">El objetivo principal de este d\u00eda es aumentar la conciencia entre el p\u00fablico en general y los tomadores de decisiones sobre las enfermedades raras y su impacto en la vida de los pacientes. La sensibilizaci\u00f3n de las enfermedades raras es tan importante ya que 1 de cada 20 persona van a vivir con una enfermedad raraen alg\u00fan momento de su vida. A pesar de esto, no existe cura para la mayor\u00eda de enfermedades raras y muchos no son diagnosticados. <\/span><\/p>\n<p class=\"MsoNormal\"><span style=\"font-size: 12.0pt\">&nbsp;<\/span><\/p>\n<\/div>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13613-%C2%A1s%C3%BAmate-al-d%C3%ADa-mundial-de-las-enfermedades-raras-con-eurordis\" target=\"_blank\" rel=\"noopener noreferrer\">\u00a1S\u00famate al D\u00eda Mundial de las Enfermedades Raras con EURORDIS!<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Solo quedan cinco d\u00edas para el D\u00eda Mundial de las Enfermedades Raras y desde EURORDIS te dan la oportunidad de colaborar con ellos en esta jornada tan importante para el colectivo de personas que conviven con patolog\u00edas poco frecuentes y sus familiares.&nbsp; \u00bfC\u00f3mo [&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-5278","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>\u00a1S\u00famate al D\u00eda Mundial de las Enfermedades Raras con EURORDIS! 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