{"id":3690,"date":"2018-04-30T00:42:00","date_gmt":"2018-04-30T00:42:00","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/"},"modified":"2018-04-30T00:42:00","modified_gmt":"2018-04-30T00:42:00","slug":"10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/","title":{"rendered":"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH"},"content":{"rendered":"

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

Fuente: EURORDIS<\/a><\/span> | La Conferencia Europea de Enfermedades Raras y Medicamentos Hu\u00e9rfanos 2018 (ECRD) tendr\u00e1 lugar en Viena del 10 al 12 de mayo. El movimiento espa\u00f1ol de pacientes estar\u00e1 representado aqu\u00ed por Juan Carri\u00f3n y Alba Ancochea, Presidente y Directora, respectivamente, de nuestra Federaci\u00f3n y Fundaci\u00f3n.<\/p>\n

El tema de 2018 es ‘Las Enfermedades Raras 360\u00b0: estrategias de colaboraci\u00f3n para que nadie quede excluido’ y busca fortalecer el papel que juega la conferencia para reunir y facilitar debates eficaces sobre pol\u00edtica 360\u00ba entre todos los miembros del colectivo de enfermedades raras. Las sesiones de la conferencia se centrar\u00e1n en seis temas concretos: investigaci\u00f3n, medicamentos, el paciente digital, calidad de vida, econom\u00eda y equidad.<\/p>\n

La ECRD, el evento m\u00e1s importante para el colectivo de enfermedades raras en Europa, ofrece la oportunidad para establecer redes y debates eficaces sobre pol\u00edtica entre todos los grupos de inter\u00e9s de las enfermedades raras incluyendo a los defensores de pacientes, responsables pol\u00edticos, representantes del sector sanitario, cl\u00ednicos, reguladores y representantes de los Estados miembros.<\/p>\n

La conferencia se celebrar\u00e1 en un momento cr\u00edtico, un a\u00f1o antes de las pr\u00f3ximas elecciones al Parlamento Europeo. Las sesiones de la ECRD 2018 servir\u00e1n para demostrar y reforzar la importancia de acciones europeas en el \u00e1mbito de las enfermedades raras, ya que precisamente la colaboraci\u00f3n de la UE ha sido fundamental para el desarrollo de los planes nacionales para las enfermedades raras y en el lanzamiento de las primeras Redes Europeas de Referencia<\/a><\/span>.<\/p>\n

Fuente: <\/span>EURORDIS<\/a>.<\/span><\/p>\n

\u00daltima actualizaci\u00f3n: 05\/12\/2017.<\/p>\n

 <\/p>\n

Fuente: FEDER 10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: EURORDIS | La Conferencia Europea de Enfermedades Raras y Medicamentos Hu\u00e9rfanos 2018 (ECRD) tendr\u00e1 lugar en Viena del 10 al 12 de mayo. El movimiento espa\u00f1ol de pacientes estar\u00e1 representado aqu\u00ed por Juan Carri\u00f3n y Alba Ancochea, Presidente y Directora, respectivamente, de […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3690","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\n10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH - 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\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH - 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: Fuente: EURORDIS | La Conferencia Europea de Enfermedades Raras y Medicamentos Hu\u00e9rfanos 2018 (ECRD) tendr\u00e1 lugar en Viena del 10 al 12 de mayo. El movimiento espa\u00f1ol de pacientes estar\u00e1 representado aqu\u00ed por Juan Carri\u00f3n y Alba Ancochea, Presidente y Directora, respectivamente, de […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/\" \/>\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=\"2018-04-30T00:42:00+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\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH\",\"datePublished\":\"2018-04-30T00:42:00+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/\"},\"wordCount\":297,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/\",\"name\":\"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2018-04-30T00:42:00+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/30\\\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH\"}]},{\"@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":"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH - 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\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/","og_locale":"es_ES","og_type":"article","og_title":"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: EURORDIS | La Conferencia Europea de Enfermedades Raras y Medicamentos Hu\u00e9rfanos 2018 (ECRD) tendr\u00e1 lugar en Viena del 10 al 12 de mayo. El movimiento espa\u00f1ol de pacientes estar\u00e1 representado aqu\u00ed por Juan Carri\u00f3n y Alba Ancochea, Presidente y Directora, respectivamente, de […]","og_url":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2018-04-30T00:42:00+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\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH","datePublished":"2018-04-30T00:42:00+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/"},"wordCount":297,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/","url":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/","name":"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2018-04-30T00:42:00+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/30\/10-12-de-mayo-de-2018-conferencia-europea-de-er-y-mm-hh\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"10-12 de mayo de 2018: Conferencia Europea de ER y MM.HH"}]},{"@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\/3690","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=3690"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/3690\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=3690"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=3690"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=3690"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}