{"id":4604,"date":"2019-08-28T09:44:00","date_gmt":"2019-08-28T09:44:00","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/"},"modified":"2019-08-28T09:44:00","modified_gmt":"2019-08-28T09:44:00","slug":"feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/","title":{"rendered":"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) y el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus familias (CREER), dependiente del IMSERSO, protagonizar\u00e1n, con motivo del XX aniversario de la Federaci\u00f3n y de los 10 a\u00f1os desde la creaci\u00f3n del CREER, el cup\u00f3n para el sorteo de la ONCE del 17 de septiembre.<\/p>\n<p>Esta iniciativa y aniversarios se enmarcan dentro de la X Escuela de Formaci\u00f3n que organiza FEDER junto al CREER. Este evento tiene como objetivo principal, potenciar la participaci\u00f3n de las entidades para el intercambio de buenas pr\u00e1cticas con la mirada puesta a nivel nacional y mundial, ya que, como novedad, esta reuni\u00f3n se convierte en el primer encuentro internacional de la Federaci\u00f3n.<\/p>\n<p>\u201cQueremos agradecer el compromiso de la ONCE por las enfermedades poco frecuentes, ya que a trav\u00e9s del cup\u00f3n, podemos acercar nuestra lucha y trabajo diario a la sociedad\u201d Afirma Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>Las enfermedades raras son aquellas que cuentan con una baja prevalencia, concretamente cuando afectan a 5 de cada 10.000 habitantes y con las que conviven el 7% de la poblaci\u00f3n. Por ello, es esencial la visibilizaci\u00f3n para as\u00ed, crear una conciencia social sobre las necesidades comunes de los pacientes como, un diagn\u00f3stico precoz y un tratamiento eficaz para su patolog\u00eda.<\/p>\n<p><span style=\"font-size: 12pt\">20 a\u00f1os caminando junto a ti<\/span><\/p>\n<p>FEDER naci\u00f3 en el 1999, en Sevilla, de la mano de 7 entidades. Durante este tiempo, m\u00e1s de 354 asociaciones se sumaron para caminar juntos por la defensa de los intereses comunes de los pacientes y para mejorar la calidad de vida de los m\u00e1s de tres millones de personas que conviven con una enfermedad poco frecuente en Espa\u00f1a.<\/p>\n<p><span style=\"font-size: 12pt\">X Escuela de Formaci\u00f3n CREER-FEDER<\/span><\/p>\n<p>Este encuentro, que se celebrar\u00e1 el 19 y 20 de septiembre en el CREER de Burgos, consigue reunir a pacientes y a profesionales del \u00e1mbito nacional e internacionales, quienes participar\u00e1n en mesas redondas que abordar\u00e1n la promoci\u00f3n de la investigaci\u00f3n, los centros de atenci\u00f3n especializados, servicios de apoyo como l\u00edneas de ayuda, psicolog\u00eda y rehabilitaci\u00f3n, transformaci\u00f3n social e incidencia pol\u00edtica. Adem\u00e1s, se organizar\u00e1 dos talleres en lo que podr\u00e1n participar los asistentes para abordar las enfermedades poco frecuentes.&nbsp;<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 19\/07\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12726-feder-y-el-creer-protagonizan-un-cup%C3%B3n-de-la-once-con-motivo-de-sus-aniversarios\" target=\"_blank\" rel=\"noopener noreferrer\">FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) y el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus familias (CREER), dependiente del IMSERSO, protagonizar\u00e1n, con motivo del XX aniversario de la Federaci\u00f3n y de los 10 a\u00f1os desde [&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-4604","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios - 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\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios - 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: &nbsp; La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) y el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus familias (CREER), dependiente del IMSERSO, protagonizar\u00e1n, con motivo del XX aniversario de la Federaci\u00f3n y de los 10 a\u00f1os desde [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/\" \/>\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=\"2019-08-28T09:44:00+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=\"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\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios\",\"datePublished\":\"2019-08-28T09:44:00+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/\"},\"wordCount\":444,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/\",\"name\":\"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2019-08-28T09:44:00+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/08\\\/28\\\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios\"}]},{\"@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 y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios - 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\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/","og_locale":"es_ES","og_type":"article","og_title":"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) y el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus familias (CREER), dependiente del IMSERSO, protagonizar\u00e1n, con motivo del XX aniversario de la Federaci\u00f3n y de los 10 a\u00f1os desde [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2019-08-28T09:44:00+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":"2 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios","datePublished":"2019-08-28T09:44:00+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/"},"wordCount":444,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/","url":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/","name":"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2019-08-28T09:44:00+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/28\/feder-y-el-creer-protagonizan-un-cupon-de-la-once-con-motivo-de-sus-aniversarios\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"FEDER y el CREER protagonizan un cup\u00f3n de la ONCE con motivo de sus aniversarios"}]},{"@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\/4604","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=4604"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/4604\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=4604"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=4604"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=4604"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}