{"id":4106,"date":"2018-11-22T07:52:57","date_gmt":"2018-11-22T07:52:57","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/"},"modified":"2018-11-22T07:52:57","modified_gmt":"2018-11-22T07:52:57","slug":"representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/","title":{"rendered":"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Fuente: <span style=\"text-decoration: underline\"><a href=\"https:\/\/www.ciberer.es\/media\/1003004\/programa-simposio-enfermedades-raras-22-noviembre-2018.pdf\">CIBERER<\/a><\/span> | El 22 de noviembre se celebra en Madrid un Simposio Nacional de Enfermedades Raras bajo el lema: &#8216;Nuevos avances en enfermedades raras: del desconcierto a la esperanza&#8217;. En esta cita, que tendr\u00e1 en el&nbsp;Centro de Investigaciones Biol\u00f3gicas&nbsp;(CIB-CSIC), estaremos representados por Santiago de la Riva, Vicepresidente de la Fundaci\u00f3n FEDER.<\/p>\n<p>El Simposio de Enfermedades Raras \u201cNUEVOS AVANCES EN ENFERMEDADES&nbsp;RARAS: DEL DESCONCIERTO A LA ESPERANZA:\u201d tiene dos objetivos principales:<\/p>\n<p>1) Dar a conocer a la comunidad cient\u00edfica la coordinaci\u00f3n de las enfermedades&nbsp;raras desde el punto de vista institucional, as\u00ed como desde el punto de vista cl\u00ednico&nbsp;y de los pacientes; y 2) Dar a conocer a aquellos grupos de investigaci\u00f3n que&nbsp;est\u00e1n generando nuevos y prometedores avances cl\u00ednicos en diferentes&nbsp;enfermedades raras. As\u00ed mismo, y enlazando con la investigaci\u00f3n traslacional, se&nbsp;pretende destacar, con ejemplos reales, los conceptos de reposicionamiento y de&nbsp;designaci\u00f3n de medicamentos hu\u00e9rfanos, finalizando con una mesa redonda.<\/p>\n<p>Para alcanzar estos dos objetivos contamos con ponentes investigadores y&nbsp;cl\u00ednicos de reconocido prestigio internacional en sus disciplinas. Cada uno de ellos&nbsp;compartir\u00e1 sus \u00faltimos avances en sus enfermedades raras respectivas,&nbsp;destacando principalmente aquellas investigaciones con perspectiva traslacional, ensayos cl\u00ednicos realizados, en cartera o en desarrollo. La puesta en com\u00fan de&nbsp;nuevas t\u00e9cnicas y aproximaciones terap\u00e9uticas posibilitar\u00e1 un debate y una&nbsp;cooperaci\u00f3n intergrupos, de la que esperamos obtener un efecto sin\u00e9rgico tanto en&nbsp;el avance del conocimiento como en la colaboraci\u00f3n en la actividad cient\u00edfica.<\/p>\n<p>Con la idea de la transferencia de conocimiento como base, este simposio est\u00e1&nbsp;principalmente dirigido a la comunidad cient\u00edfica y cl\u00ednica, siendo adem\u00e1s muy&nbsp;apreciada y esperada la presencia de estudiantes, licenciados y j\u00f3venes&nbsp;investigadores en Biomedicina y disciplinas afines. No obstante, conocido el compromiso de los pacientes de enfermedades raras, este simposio tambi\u00e9n queda&nbsp;abierto a su asistencia.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 22\/11\/2018.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11464-representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\" target=\"_blank\">Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: CIBERER | El 22 de noviembre se celebra en Madrid un Simposio Nacional de Enfermedades Raras bajo el lema: &#8216;Nuevos avances en enfermedades raras: del desconcierto a la esperanza&#8217;. En esta cita, que tendr\u00e1 en el&nbsp;Centro de Investigaciones Biol\u00f3gicas&nbsp;(CIB-CSIC), estaremos representados por [&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-4106","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>Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras - 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\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras - 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: CIBERER | El 22 de noviembre se celebra en Madrid un Simposio Nacional de Enfermedades Raras bajo el lema: &#8216;Nuevos avances en enfermedades raras: del desconcierto a la esperanza&#8217;. En esta cita, que tendr\u00e1 en el&nbsp;Centro de Investigaciones Biol\u00f3gicas&nbsp;(CIB-CSIC), estaremos representados por [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/\" \/>\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=\"2018-11-22T07:52:57+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\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras\",\"datePublished\":\"2018-11-22T07:52:57+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/\"},\"wordCount\":383,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/\",\"name\":\"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2018-11-22T07:52:57+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/11\\\/22\\\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras\"}]},{\"@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":"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras - 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\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/","og_locale":"es_ES","og_type":"article","og_title":"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: CIBERER | El 22 de noviembre se celebra en Madrid un Simposio Nacional de Enfermedades Raras bajo el lema: &#8216;Nuevos avances en enfermedades raras: del desconcierto a la esperanza&#8217;. En esta cita, que tendr\u00e1 en el&nbsp;Centro de Investigaciones Biol\u00f3gicas&nbsp;(CIB-CSIC), estaremos representados por [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2018-11-22T07:52:57+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\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras","datePublished":"2018-11-22T07:52:57+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/"},"wordCount":383,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/","url":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/","name":"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2018-11-22T07:52:57+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/22\/representamos-a-nuestro-colectivo-en-una-jornada-sobre-nuevos-avances-en-enfermedades-raras\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Representamos a nuestro colectivo en una jornada sobre nuevos avances en enfermedades raras"}]},{"@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\/4106","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=4106"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/4106\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=4106"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=4106"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=4106"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}