{"id":6880,"date":"2021-03-01T13:30:09","date_gmt":"2021-03-01T13:30:09","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/01\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\/"},"modified":"2021-03-01T13:30:09","modified_gmt":"2021-03-01T13:30:09","slug":"esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/01\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\/","title":{"rendered":"Esta semana celebramos el Acto Oficial por el D\u00eda Mundial de las Enfermedades Raras"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El pr\u00f3ximo 5 de marzo celebraremos el Acto Oficial del D\u00eda Mundial de las Enfermedades Raras, el cual, estar\u00e1 presidido, un a\u00f1o m\u00e1s por SM La Reina. Este a\u00f1o tendr\u00e1 como objetivo posicionar la campa\u00f1a &#8216;S\u00edntomas de Esperanza&#8217; que tiene como objetivo, posicionar el impacto de la COVID-19 en nuestro colectivo y se trasladar\u00e1n las lecciones aprendidas en esta crisis sanitarias, centr\u00e1ndonos en tres ejes: Servicios, transformaci\u00f3n social e Investigaci\u00f3n.<\/p>\n<p>A trav\u00e9s de este acto posicionamos los tres ejes con tres valores, UNI\u00d3N, LUCHA Y COMPROMISO:<\/p>\n<p>Compromiso por la INVESTIGACI\u00d3N: La COVID-19 ha motivado el compromiso nacional, internacional, p\u00fablico y privado para hacer posible la investigaci\u00f3n.<\/p>\n<p>Lucha para la TRANSFORMACI\u00d3N SOCIAL: En un momento en que las restricciones imped\u00edan recibir atenci\u00f3n, se pusieron en marcha soluciones innovadoras, como la telemedicina o el tratamiento domiciliario.<\/p>\n<p>Uni\u00f3n para generar SERVICIOS: Frente a la paralizaci\u00f3n de las terapias derivada de la pandemia, la primera respuesta -y la m\u00e1s especializada- fue la del propio tejido asociativo de referencia. Es necesario apoyar su acci\u00f3n, en un momento en que adem\u00e1s las demandas de las familias son crecientes.<\/p>\n<p>Pr\u00f3ximamente m\u00e1s informaci\u00f3n.<\/p>\n<p>\u00daltima actualizaci\u00f3n 01\/03\/2021<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14996-esta-semana-celebramos-el-acto-oficial-por-el-d%C3%ADa-mundial-de-las-enfermedades-raras\" target=\"_blank\" rel=\"noopener\">Esta semana celebramos el Acto Oficial por el D\u00eda Mundial de las Enfermedades Raras<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El pr\u00f3ximo 5 de marzo celebraremos el Acto Oficial del D\u00eda Mundial de las Enfermedades Raras, el cual, estar\u00e1 presidido, un a\u00f1o m\u00e1s por SM La Reina. Este a\u00f1o tendr\u00e1 como objetivo posicionar la campa\u00f1a &#8216;S\u00edntomas de Esperanza&#8217; que tiene como objetivo, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-6880","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Esta semana celebramos el Acto Oficial por el D\u00eda Mundial de las Enfermedades Raras - 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\/2021\/03\/01\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Esta semana celebramos el Acto Oficial por el D\u00eda Mundial de las Enfermedades Raras - 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; El pr\u00f3ximo 5 de marzo celebraremos el Acto Oficial del D\u00eda Mundial de las Enfermedades Raras, el cual, estar\u00e1 presidido, un a\u00f1o m\u00e1s por SM La Reina. Este a\u00f1o tendr\u00e1 como objetivo posicionar la campa\u00f1a &#8216;S\u00edntomas de Esperanza&#8217; que tiene como objetivo, [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2021\/03\/01\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:site_name\" content=\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/asociacionsindromecharge\" \/>\n<meta property=\"article:published_time\" content=\"2021-03-01T13:30:09+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"98\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Charge\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:site\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Charge\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/01\\\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/01\\\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Esta semana celebramos el Acto Oficial por el D\u00eda Mundial de las Enfermedades Raras\",\"datePublished\":\"2021-03-01T13:30:09+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/01\\\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\\\/\"},\"wordCount\":260,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/01\\\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/01\\\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/01\\\/esta-semana-celebramos-el-acto-oficial-por-el-dia-mundial-de-las-enfermedades-raras\\\/\",\"name\":\"Esta semana celebramos el Acto Oficial por el D\u00eda Mundial de las Enfermedades Raras - 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