{"id":6353,"date":"2020-11-06T07:04:52","date_gmt":"2020-11-06T07:04:52","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/"},"modified":"2020-11-06T07:04:52","modified_gmt":"2020-11-06T07:04:52","slug":"trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/","title":{"rendered":"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Ayer, la Federaci\u00f3n Argentina de Enfermedades Poco Frecuentes (FADEPOF) celebr\u00f3 el Conversatorio Poco Frecuente y desde FEDER estuvimos representados por nuestra Directora Alba Ancochea, quien particip\u00f3 como panelista del evento.<\/p>\n<p>A trav\u00e9s de este encuentro, los agentes involucrados en el abordaje de las enfermedades poco frecuentes, generaron un di\u00e1logo sobre los aprendizajes de nuestro sistema de salud para desarrollar un modelo eficiente de pol\u00edticas socio-sanitarias destinadas a atender las necesidades integrales de la poblaci\u00f3n con enfermedades poco frecuentes, de modos sustentable y de calidad en Argentina.<\/p>\n<p>El 4 de noviembre se habl\u00f3 sobre los sistemas de salud, pol\u00edticas sobre enfermedades poco frecuentes en Argentina, los datos sanitarios y su influencia e la toma de decisi\u00f3n y en la atenci\u00f3n. Por otro lado, al d\u00eda siguiente se habl\u00f3 sobre el coste de los medicamentos, los mitos y verdades sobre la judicializaci\u00f3n de la salud y el futuro de las terapias.<\/p>\n<p>Por otra parte, desde FEDER trasladamos las buenas pr\u00e1cticas en pol\u00edticas p\u00fablicas sobre enfermedades poco frecuentes en Espa\u00f1a, compartiendo nuestra experiencia para potenciar as\u00ed, un trabajo coordinado y en red con el resto de pa\u00edses.<\/p>\n<p><span style=\"font-size: 12pt\">Conoce m\u00e1s sobre FADEPOF<\/span><\/p>\n<p>La misi\u00f3n de FADEPOF es potenciar el trabajo conjunto de las Organizaciones de la Sociedad Civil (OSC) de Enfermedades Poco Frecuentes (EPOF) promoviendo acciones de investigaci\u00f3n, concientizaci\u00f3n, difusi\u00f3n y defensa de los derechos de las personas afectadas, con el fin de mejorar su calidad de vida.<\/p>\n<p>\u00daltima actualizaci\u00f3n 06\/11\/2020<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14468-trasladamos-las-buenas-pr%C3%A1cticas-en-pol%C3%ADticas-sobre-er-en-espa%C3%B1a-en-el-conversatorio-poco-frecuente\" target=\"_blank\" rel=\"noopener noreferrer\">Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Ayer, la Federaci\u00f3n Argentina de Enfermedades Poco Frecuentes (FADEPOF) celebr\u00f3 el Conversatorio Poco Frecuente y desde FEDER estuvimos representados por nuestra Directora Alba Ancochea, quien particip\u00f3 como panelista del evento. A trav\u00e9s de este encuentro, los agentes involucrados en el abordaje de [&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-6353","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente - 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\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente - 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; Ayer, la Federaci\u00f3n Argentina de Enfermedades Poco Frecuentes (FADEPOF) celebr\u00f3 el Conversatorio Poco Frecuente y desde FEDER estuvimos representados por nuestra Directora Alba Ancochea, quien particip\u00f3 como panelista del evento. A trav\u00e9s de este encuentro, los agentes involucrados en el abordaje de [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/\" \/>\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=\"2020-11-06T07:04:52+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\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente\",\"datePublished\":\"2020-11-06T07:04:52+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/\"},\"wordCount\":308,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/\",\"name\":\"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2020-11-06T07:04:52+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/11\\\/06\\\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente\"}]},{\"@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":"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente - 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\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/","og_locale":"es_ES","og_type":"article","og_title":"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Ayer, la Federaci\u00f3n Argentina de Enfermedades Poco Frecuentes (FADEPOF) celebr\u00f3 el Conversatorio Poco Frecuente y desde FEDER estuvimos representados por nuestra Directora Alba Ancochea, quien particip\u00f3 como panelista del evento. A trav\u00e9s de este encuentro, los agentes involucrados en el abordaje de [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2020-11-06T07:04:52+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\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente","datePublished":"2020-11-06T07:04:52+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/"},"wordCount":308,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/","url":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/","name":"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2020-11-06T07:04:52+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2020\/11\/06\/trasladamos-las-buenas-practicas-en-politicas-sobre-er-en-espana-en-el-conversatorio-poco-frecuente\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Trasladamos las buenas pr\u00e1cticas en pol\u00edticas sobre ER en Espa\u00f1a en el Conversatorio Poco Frecuente"}]},{"@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\/6353","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=6353"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/6353\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=6353"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=6353"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=6353"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}