{"id":1456,"date":"2015-11-03T11:42:38","date_gmt":"2015-11-03T11:42:38","guid":{"rendered":"http:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/"},"modified":"2015-11-03T11:42:38","modified_gmt":"2015-11-03T11:42:38","slug":"feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/","title":{"rendered":"FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras"},"content":{"rendered":"

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

La Delegaci\u00f3n de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) en Extremadura celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras el pr\u00f3ximo 17 de noviembre en el Hospital Infanta Cristina de Badajoz.<\/p>\n

El Presidente de la Junta de Extremadura, D. Guillermo Fern\u00e1ndez Vara, ser\u00e1 el invitado de honor de esta jornada cuyo principal objetivo es \u201ccrear un espacio donde los principales referentes sanitarios y cient\u00edficos, pacientes, familias y asociaciones puedan abordar la situaci\u00f3n actual de las enfermedades de baja prevalencia en Extremadura\u201d, ha explicado Modesto D\u00edez, Delegado de FEDER Extremadura.<\/p>\n

Con este fin, se busca \u201ccomprobar qu\u00e9 hemos conseguido a lo largo de 2014 en nuestra Comunidad y trabajar de cara un futuro pr\u00f3ximo para continuar avanzando en la defensa de derechos de los extreme\u00f1os con Enfermedades Poco Frecuentes\u201d, ha avanzado D\u00edez. Para ello, esta cita contar\u00e1 con grandes autoridades cient\u00edficas, institucionales y cobertura medi\u00e1tica.<\/p>\n

Adem\u00e1s de Fern\u00e1ndez Vara y Modesto D\u00edez, la inauguraci\u00f3n tambi\u00e9n contar\u00e1 con las intervenciones de Juan Carri\u00f3n, Presidente de FEDER, Jos\u00e9 Mar\u00eda Vergeles, Consejero de Sanidad de la Junta de Extremadura, Francisco Javier Fragoso, Alcalde de Badajoz, D\u00e1maso Villa M\u00ednguez, Gerente del Hospital Infanta Cristina de Badajoz y Almudena Contreras, Presidenta de la Asociaci\u00f3n la Vida con Hernia Diafragm\u00e1tica Cong\u00e9nita.<\/p>\n

Las jornadas se desarrollar\u00e1n en diferentes mesas de debate. A trav\u00e9s de ellas se analizar\u00e1 el acceso al diagn\u00f3stico y tratamiento de las Enfermedades Poco Frecuentes as\u00ed como los \u00faltimos avances en el proceso, sus principales dificultades y sus consecuencias, tanto en adultos como en los m\u00e1s peque\u00f1os.<\/p>\n

La clausura vendr\u00e1 de la mano del testimonio de Jes\u00fas, representante de la Asociaci\u00f3n Extreme\u00f1a de Retinosis Pigmentaria. Adem\u00e1s, intervendr\u00e1n tambi\u00e9n D\u00edez Sol\u00eds, Miguel \u00c1ngel Gallardo, Presidente de la Diputaci\u00f3n de Badajoz, Jos\u00e9 Galindo Ardila, Presidente del CERMI en Extremadura, Segundo P\u00edriz, Rector de la Universidad de Extremadura.<\/p>\n

Las personas que deseen inscribirse deben enviar el bolet\u00edn de inscripci\u00f3n a la Delegaci\u00f3n de FEDER Extremadura a trav\u00e9s de Extremadura@enfermedades-raras.org<\/a> \/ 924 25 23 17. La cuota, de cinco euros, incluye documentaci\u00f3n, asistencia y desayuno continental.<\/p>\n

Fuente: FEDER FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Delegaci\u00f3n de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) en Extremadura celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras el pr\u00f3ximo 17 de noviembre en el Hospital Infanta Cristina de Badajoz. El Presidente de la Junta de Extremadura, D. Guillermo Fern\u00e1ndez Vara, […]<\/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-1456","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nFEDER celebra su IX Jornada Extreme\u00f1a de 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\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER celebra su IX Jornada Extreme\u00f1a de 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: La Delegaci\u00f3n de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) en Extremadura celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras el pr\u00f3ximo 17 de noviembre en el Hospital Infanta Cristina de Badajoz. El Presidente de la Junta de Extremadura, D. Guillermo Fern\u00e1ndez Vara, […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-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=\"2015-11-03T11:42:38+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\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras\",\"datePublished\":\"2015-11-03T11:42:38+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/\"},\"wordCount\":413,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/\",\"name\":\"FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2015-11-03T11:42:38+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2015\\\/11\\\/03\\\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"FEDER celebra su IX Jornada Extreme\u00f1a de 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":"FEDER celebra su IX Jornada Extreme\u00f1a de 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\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/","og_locale":"es_ES","og_type":"article","og_title":"FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Delegaci\u00f3n de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) en Extremadura celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras el pr\u00f3ximo 17 de noviembre en el Hospital Infanta Cristina de Badajoz. El Presidente de la Junta de Extremadura, D. Guillermo Fern\u00e1ndez Vara, […]","og_url":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2015-11-03T11:42:38+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\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras","datePublished":"2015-11-03T11:42:38+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/"},"wordCount":413,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/","url":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/","name":"FEDER celebra su IX Jornada Extreme\u00f1a de Enfermedades Raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2015-11-03T11:42:38+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/03\/feder-celebra-su-ix-jornada-extremena-de-enfermedades-raras\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"FEDER celebra su IX Jornada Extreme\u00f1a de 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\/1456","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=1456"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/1456\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=1456"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=1456"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=1456"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}