{"id":3448,"date":"2018-01-02T10:27:00","date_gmt":"2018-01-02T10:27:00","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/"},"modified":"2018-01-02T10:27:00","modified_gmt":"2018-01-02T10:27:00","slug":"nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/","title":{"rendered":"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot;"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p style=\"text-align: justify\">En FEDER queremos situar a las enfermedades poco frecuentes como un desaf\u00edo de salud p\u00fablica. Para ello, instamos a impulsar medidas que den respuesta a las personas con ER; medidas que recogemos en nuestro dec\u00e1logo de prioridades.<\/p>\n<li><a href=\"https:\/\/enfermedades-raras.org\/images\/Propuestas_Prioritarias_corta.pdf\" target=\"_blank\"><span style=\"text-decoration: underline\"><b>Descarga nuestro D\u00e9calogo de prioridades aqu\u00ed<\/b>.<\/span><\/a><\/li>\n<p>Estas propuestas prioritarias deben contemplar e implicar al paciente en todo el proceso de la enfermedad, teniendo en cuenta el conocimiento y experiencia que desde su papel pueden aportar en el abordaje de la patolog\u00eda.<\/p>\n<p>Para ello, se propone y reclama una participaci\u00f3n activa de las asociaciones de pacientes en los diferentes comit\u00e9s, foros de discusi\u00f3n o grupos de trabajo que dan soporte a la Administraci\u00f3n desde un punto de vista consultivo y decisorio. Todo ello, bajo las premisas de la \u00e9tica, el derecho a la intimidad y la transparencia en el tratamiento de la informaci\u00f3n.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/9844-conoce-nuestras-prioridades-2016\" target=\"_blank\">Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot;<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: En FEDER queremos situar a las enfermedades poco frecuentes como un desaf\u00edo de salud p\u00fablica. Para ello, instamos a impulsar medidas que den respuesta a las personas con ER; medidas que recogemos en nuestro dec\u00e1logo de prioridades. Descarga nuestro D\u00e9calogo de prioridades aqu\u00ed. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-3448","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>Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot; - 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\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot; - 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: En FEDER queremos situar a las enfermedades poco frecuentes como un desaf\u00edo de salud p\u00fablica. Para ello, instamos a impulsar medidas que den respuesta a las personas con ER; medidas que recogemos en nuestro dec\u00e1logo de prioridades. Descarga nuestro D\u00e9calogo de prioridades aqu\u00ed. [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/\" \/>\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=\"2018-01-02T10:27:00+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\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot;\",\"datePublished\":\"2018-01-02T10:27:00+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/\"},\"wordCount\":191,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/\",\"name\":\"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot; - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2018-01-02T10:27:00+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/01\\\/02\\\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot;\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/\",\"name\":\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/sindromecharge.es\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"es\"},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\",\"name\":\"Charge\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x\",\"caption\":\"Charge\"},\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/author\\\/admin\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot; - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/","og_locale":"es_ES","og_type":"article","og_title":"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot; - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: En FEDER queremos situar a las enfermedades poco frecuentes como un desaf\u00edo de salud p\u00fablica. Para ello, instamos a impulsar medidas que den respuesta a las personas con ER; medidas que recogemos en nuestro dec\u00e1logo de prioridades. Descarga nuestro D\u00e9calogo de prioridades aqu\u00ed. [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2018-01-02T10:27:00+00:00","og_image":[{"width":300,"height":98,"url":"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png","type":"image\/png"}],"author":"Charge","twitter_card":"summary_large_image","twitter_creator":"@sindromecharge","twitter_site":"@sindromecharge","twitter_misc":{"Escrito por":"Charge","Tiempo de lectura":"1 minuto"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot;","datePublished":"2018-01-02T10:27:00+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/"},"wordCount":191,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/","url":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/","name":"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot; - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2018-01-02T10:27:00+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/02\/nuestro-decalogo-de-prioridades-nuestra-carta-a-los-reyes-magos\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Nuestro Dec\u00e1logo de Prioridades, nuestra &quot;carta a los Reyes Magos&quot;"}]},{"@type":"WebSite","@id":"https:\/\/sindromecharge.es\/#website","url":"https:\/\/sindromecharge.es\/","name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/sindromecharge.es\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"es"},{"@type":"Person","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039","name":"Charge","image":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/secure.gravatar.com\/avatar\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x","url":"https:\/\/secure.gravatar.com\/avatar\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x","caption":"Charge"},"url":"https:\/\/sindromecharge.es\/index.php\/author\/admin\/"}]}},"_links":{"self":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/3448","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/comments?post=3448"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/3448\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=3448"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=3448"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=3448"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}