{"id":6309,"date":"2020-10-26T11:14:27","date_gmt":"2020-10-26T11:14:27","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/"},"modified":"2020-10-26T11:14:27","modified_gmt":"2020-10-26T11:14:27","slug":"compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/","title":{"rendered":"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Hoy se celebrar\u00e1 la I Jornada \u201cCompartiendo Experiencias\u201d organizada por la Federaci\u00f3n de Sindicatos Independientes de Ense\u00f1anza. Como sindicato especializado en ense\u00f1anza y discapacidad, FSIE refuerza as\u00ed su compromiso con las entidades que comparten el firme prop\u00f3sito de mejorar la calidad de vida de las personas con discapacidad y sus familiares, aportando visibilidad a su labor y a la gran diversidad de necesidades que atienden.<\/p>\n<p>El encuentro ser\u00e1 presentado por Miguel Malla, Secretario de Acci\u00f3n Sindical de FSIE, y moderado por Javier Mu\u00f1oyerro, Secretario General, y Mar\u00eda Esther Jim\u00e9nez, representante de FSIE para Discapacidad. Como ponentes invitados asistir\u00e1n Magdalena Hern\u00e1ndez Mediero, Presidenta y fundadora de AFA Salamanca, Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n, Cristina Gonz\u00e1lez Aci\u00e9n, Presidenta de FEAFES Andaluc\u00eda, y Jos\u00e9 Guzm\u00e1n, Presidente de X FR\u00c1GIL Espa\u00f1a.<\/p>\n<p>El objetivo fundamental de esta jornada, que cuenta ya con m\u00e1s de 110 inscritos, es dar a conocer enfermedades raras, entre ellas el X Fr\u00e1gil, y profundizar en otras como el Alzheimer y la salud mental, y en particular como se afrontan todas ellas desde la perspectiva educativa y de atenci\u00f3n especializada.<\/p>\n<p>A trav\u00e9s de nuestra participaci\u00f3n con la representaci\u00f3n de Juan Carri\u00f3n, trasladaremos la realidad de los m\u00e1s de tres millones de personas que conviven en Espa\u00f1a con alguna enfermedad poco frecuente, dando a conocer las necesidades comunes del colectivo como son el tratamiento eficaz y el diagn\u00f3stico precoz. Adem\u00e1s, reflejaremos la problem\u00e1tica a la que se tienen que enfrentan, la cual, se ha incrementado debido a la situaci\u00f3n actual derivada de la COVID-19 ya que, los m\u00e1s de tres millones de personas que tienen alguna de estas patolog\u00edas han visto como se paralizaban sus terapias, la cancelaci\u00f3n de las intervenciones quirurgicas o el retraso de las consultas con sus especialistas.<\/p>\n<p>Para inscribirte puedes hacerlo pinchando <a href=\"https:\/\/docs.google.com\/forms\/d\/e\/1FAIpQLSeA2PSybDoRUUU3YxLAWwaOQsObEDfg0OY47gGjyS0hwGpiBw\/viewform\" target=\"_blank\" rel=\"noopener noreferrer\">aqu\u00ed<\/a>. La jornada dar\u00e1 comienzo a las 18:00 horas.<\/p>\n<p>\u00daltima actualizaci\u00f3n 26\/10\/2020<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14426-compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\" target=\"_blank\" rel=\"noopener noreferrer\">Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Hoy se celebrar\u00e1 la I Jornada \u201cCompartiendo Experiencias\u201d organizada por la Federaci\u00f3n de Sindicatos Independientes de Ense\u00f1anza. Como sindicato especializado en ense\u00f1anza y discapacidad, FSIE refuerza as\u00ed su compromiso con las entidades que comparten el firme prop\u00f3sito de mejorar la calidad de vida [&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-6309","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE - 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\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE - 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: Hoy se celebrar\u00e1 la I Jornada \u201cCompartiendo Experiencias\u201d organizada por la Federaci\u00f3n de Sindicatos Independientes de Ense\u00f1anza. Como sindicato especializado en ense\u00f1anza y discapacidad, FSIE refuerza as\u00ed su compromiso con las entidades que comparten el firme prop\u00f3sito de mejorar la calidad de vida [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/\" \/>\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=\"2020-10-26T11:14:27+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\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE\",\"datePublished\":\"2020-10-26T11:14:27+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/\"},\"wordCount\":377,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/\",\"name\":\"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2020-10-26T11:14:27+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2020\\\/10\\\/26\\\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE\"}]},{\"@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":"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE - 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\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/","og_locale":"es_ES","og_type":"article","og_title":"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Hoy se celebrar\u00e1 la I Jornada \u201cCompartiendo Experiencias\u201d organizada por la Federaci\u00f3n de Sindicatos Independientes de Ense\u00f1anza. Como sindicato especializado en ense\u00f1anza y discapacidad, FSIE refuerza as\u00ed su compromiso con las entidades que comparten el firme prop\u00f3sito de mejorar la calidad de vida [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2020-10-26T11:14:27+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\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE","datePublished":"2020-10-26T11:14:27+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/"},"wordCount":377,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/","url":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/","name":"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2020-10-26T11:14:27+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/26\/compartimos-nuestra-experiencia-sobre-enfermedades-raras-en-la-jornada-del-fsie\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Compartimos nuestra experiencia sobre enfermedades raras en la Jornada del FSIE"}]},{"@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\/6309","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=6309"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/6309\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=6309"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=6309"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=6309"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}