{"id":2904,"date":"2017-05-30T08:23:14","date_gmt":"2017-05-30T08:23:14","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/"},"modified":"2017-05-30T08:23:14","modified_gmt":"2017-05-30T08:23:14","slug":"iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/","title":{"rendered":"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona"},"content":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

El domingo 4 de junio se celebra en Barcelona la III Reuni\u00f3n Anual de la Red Internacional de Enfermedades Raras<\/a> (RDI) en la que estaremos representados por nuestro presidente, Juan Carri\u00f3n, y por Rosa S\u00e1nchez de Vega, nuestra antigua presidenta. A trav\u00e9s de este foro, se busca realizar una radiograf\u00eda real de la pol\u00edtica nacional y continental relativa a enfermedades raras. <\/span><\/p>\n

La RDI (por sus siglas en ingl\u00e9s) se configura como el \u00f3rgano global de todas las nacionalidades y de todas las enfermedades raras. Del I Encuentro Anual que se celebr\u00f3 en Madrid hace dos a\u00f1os, naci\u00f3 esta red para representar al movimiento ante instituciones como la OMS o Naciones Unidas, dentro de la cual se ha creado recientemente un Comit\u00e9 espec\u00edfico de ER<\/a>.<\/p>\n

Nuestro pa\u00eds ha sido testigo del nacimiento de la mayor red de ER que existe a nivel mundial y, de la mano de FEDER, ha conseguido participar activamente en encuentros como el del pr\u00f3ximo domingo o el anterior celebrado en Edimburgo en 2016.<\/p>\n

Como resultado, la consolidaci\u00f3n de la red supone el culmen de un proceso en el que hemos tomado parte a lo largo de los m\u00e1s de 18 a\u00f1os de trayectoria que nos avalan y actuando dentro de cada una de estas estructuras.<\/p>\n

Una puesta intercontinental en com\u00fan<\/h3>\n

M\u00e1s de 25 ponentes de todos los puntos de Europa, pero tambi\u00e9n en Am\u00e9rica, \u00c1frica y Asia, abordar\u00e1n la realidad que se vive en cada uno de estas regiones en una puesta en com\u00fan por mejorar la realidad de todo el colectivo de pacientes.<\/p>\n

En base a ello, se definir\u00e1 el plan de trabajo de la red para este 2017 y la declaraci\u00f3n conjunta de la RDI para situar las ER como una prioridad internacional de salud p\u00fablica. Para ello, adem\u00e1s, tomar\u00e1 especial protagonismo el papel de la red dentro de Naciones Unidas.<\/p>\n

Tras la creaci\u00f3n del nuevo Comit\u00e9 de ONG para las ER en Naciones Unidas el pasado mes de noviembre, uno de los objetivos de la RDI es garantizar el desarrollo de los objetivos de la ONU 2030 atendiendo a estas patolog\u00edas.<\/p>\n

No obstante, no ser\u00e1 la \u00fanica l\u00ednea de acci\u00f3n de la RDI. \u00abA trav\u00e9s de este foro, y con nuestra participaci\u00f3n, buscamos identificar las oportunidades para llevar a cabo una defensa global e internacional entre todos los miembros de la red\u00bb concluye Carri\u00f3n.<\/p>\n

\u00daltima actualizaci\u00f3n: 30\/05\/2017.<\/p>\n<\/p>\n

Fuente: FEDER III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El domingo 4 de junio se celebra en Barcelona la III Reuni\u00f3n Anual de la Red Internacional de Enfermedades Raras (RDI) en la que estaremos representados por nuestro presidente, Juan Carri\u00f3n, y por Rosa S\u00e1nchez de Vega, nuestra antigua presidenta. A trav\u00e9s de este foro, se […]<\/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-2904","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nIII Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona - 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\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona - 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: El domingo 4 de junio se celebra en Barcelona la III Reuni\u00f3n Anual de la Red Internacional de Enfermedades Raras (RDI) en la que estaremos representados por nuestro presidente, Juan Carri\u00f3n, y por Rosa S\u00e1nchez de Vega, nuestra antigua presidenta. A trav\u00e9s de este foro, se […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/\" \/>\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=\"2017-05-30T08:23:14+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=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona\",\"datePublished\":\"2017-05-30T08:23:14+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/\"},\"wordCount\":461,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/\",\"name\":\"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2017-05-30T08:23:14+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/05\\\/30\\\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona\"}]},{\"@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":"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona - 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\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/","og_locale":"es_ES","og_type":"article","og_title":"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El domingo 4 de junio se celebra en Barcelona la III Reuni\u00f3n Anual de la Red Internacional de Enfermedades Raras (RDI) en la que estaremos representados por nuestro presidente, Juan Carri\u00f3n, y por Rosa S\u00e1nchez de Vega, nuestra antigua presidenta. A trav\u00e9s de este foro, se […]","og_url":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2017-05-30T08:23:14+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":"2 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona","datePublished":"2017-05-30T08:23:14+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/"},"wordCount":461,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/","url":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/","name":"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2017-05-30T08:23:14+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2017\/05\/30\/iii-reunion-anual-de-la-red-internacional-de-er-en-barcelona\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"III Reuni\u00f3n Anual de la Red Internacional de ER en Barcelona"}]},{"@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\/2904","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=2904"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/2904\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=2904"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=2904"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=2904"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}