{"id":3707,"date":"2018-05-11T10:03:37","date_gmt":"2018-05-11T10:03:37","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/"},"modified":"2018-05-11T10:03:37","modified_gmt":"2018-05-11T10:03:37","slug":"participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/","title":{"rendered":"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\"><span style=\"font-size: 11.97px;line-height: 1.3\">La Universidad Francisco de Vitoria organiza la cuarta edici\u00f3n de Reuni\u00f3n de Experto y Asociaciones que centrar\u00e1 su atenci\u00f3n en el tema de las enfermedades raras que se realizar\u00e1 el pr\u00f3ximo 22 de mayo. FEDER estar\u00e1 presente gracias a la participaci\u00f3n de nuestra Delegada en Madrid, Mar\u00eda Elena Escalante; quien intervendr\u00e1 con la ponencia \u201cLas asociaciones de pacientes, liderando la lucha contra las enfermedades raras, investigaci\u00f3n y apoyo a familiar\u201d<\/span><\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">Otros de los temas que se presentar\u00e1n son: Chaperonas farmacol\u00f3gicas: \u201cLa aproximaci\u00f3n de ATLAS Molecular Pharma al tratamiento de enfermedades raras\u201d, \u201cDescubrimiento y desarrollo de Eltrombopag para el tratamiento de P\u00farpura Trombocitop\u00e9nica Inmune idiop\u00e1tica (PTI)\u201d, \u201cEl papel de la Gen\u00f3mica para la detecci\u00f3n y abordaje terap\u00e9utico de las enfermedades raras\u201d, \u201cNuevos modelos de R+D: la sinergia entre Biotechs y asociaciones de pacientes\u201d, \u201cOncoKids, la investigaci\u00f3n para la lucha contra el c\u00e1ncer pedi\u00e1trico\u201d, \u201cEl papel de la industria farmac\u00e9utica en la investigaci\u00f3n en enfermedades raras y el apoyo a las asociaciones de pacientes\u201d y \u201cViviendo con una enfermedad rara: la perspectiva de los pacientes\u201d.<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">Estas jornadas informativas se enmarcan en el programa \u201cEscuela de Enfermedades Raras\u201d que actualmente la Universidad Francisco de Vitoria lleva adelante. El objetivo de esta escuela es el de \u201cformar una nueva generaci\u00f3n de profesionales dedicados a las Enfermedades Raras, con una formaci\u00f3n integral, multidisciplinar e internacional basada en la investigaci\u00f3n continua, que entiendan su trabajo como un servicio y que aborden los problemas planteados desde la perspectiva global que exige este tipo de enfermedades: diagn\u00f3stico, tratamiento del paciente y atenci\u00f3n integral a su entorno\u201d<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">El evento se realizar\u00e1 en la Facultad de Ciencias Experimentales de la Universidad a partir de las 8:30, en la Sala de Grados del Edificio Central en el m\u00f3dulo 2.<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px;text-align: right\"><span style=\"font-size: 11.97px;font-style: normal;font-weight: normal;line-height: 15.561px\">\u00daltima actualizaci\u00f3n: 11 de mayo.<\/span><\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/10571-participamos-iv-reuni%C3%B3n-de-expertos-y-asociaciones-de-pacientes\" target=\"_blank\">Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Universidad Francisco de Vitoria organiza la cuarta edici\u00f3n de Reuni\u00f3n de Experto y Asociaciones que centrar\u00e1 su atenci\u00f3n en el tema de las enfermedades raras que se realizar\u00e1 el pr\u00f3ximo 22 de mayo. FEDER estar\u00e1 presente gracias a la participaci\u00f3n de nuestra [&hellip;]<\/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-3707","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes - 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\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes - 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: La Universidad Francisco de Vitoria organiza la cuarta edici\u00f3n de Reuni\u00f3n de Experto y Asociaciones que centrar\u00e1 su atenci\u00f3n en el tema de las enfermedades raras que se realizar\u00e1 el pr\u00f3ximo 22 de mayo. FEDER estar\u00e1 presente gracias a la participaci\u00f3n de nuestra [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/\" \/>\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=\"2018-05-11T10:03:37+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\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes\",\"datePublished\":\"2018-05-11T10:03:37+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/\"},\"wordCount\":352,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/\",\"name\":\"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2018-05-11T10:03:37+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/05\\\/11\\\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes\"}]},{\"@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":"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes - 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\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/","og_locale":"es_ES","og_type":"article","og_title":"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Universidad Francisco de Vitoria organiza la cuarta edici\u00f3n de Reuni\u00f3n de Experto y Asociaciones que centrar\u00e1 su atenci\u00f3n en el tema de las enfermedades raras que se realizar\u00e1 el pr\u00f3ximo 22 de mayo. FEDER estar\u00e1 presente gracias a la participaci\u00f3n de nuestra [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2018-05-11T10:03:37+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\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes","datePublished":"2018-05-11T10:03:37+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/"},"wordCount":352,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/","url":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/","name":"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2018-05-11T10:03:37+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/11\/participamos-iv-reunion-de-expertos-y-asociaciones-de-pacientes\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Participamos IV Reuni\u00f3n de Expertos y Asociaciones de Pacientes"}]},{"@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\/3707","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=3707"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/3707\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=3707"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=3707"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=3707"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}