{"id":7503,"date":"2020-02-29T17:46:26","date_gmt":"2020-02-29T17:46:26","guid":{"rendered":"http:\/\/www.afascol.org\/?p=7503"},"modified":"2020-02-29T17:46:37","modified_gmt":"2020-02-29T17:46:37","slug":"dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/","title":{"rendered":"D\u00eda mundial de las Enfermedades Raras"},"content":{"rendered":"\n<p>El d\u00eda m\u00e1s raro del a\u00f1o, justamente es hoy 29 de Febrero y\u00a0 se celebra\u00a0 el D\u00eda Mundial de las Enfermedades Raras. <\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-full\"><img data-attachment-id=\"7507\" data-permalink=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/noticia2020eerr_4\/\" data-orig-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&amp;ssl=1\" data-orig-size=\"200,200\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"noticia2020EERR_4\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&amp;ssl=1\" loading=\"lazy\" width=\"200\" height=\"200\" src=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?resize=200%2C200&#038;ssl=1\" alt=\"\" class=\"wp-image-7507\" data-recalc-dims=\"1\"\/><\/figure><\/div>\n\n\n\n<p>El objetivo de\nsu conmemoraci\u00f3n, es crear conciencia y ayudar a todas las personas que padecen\nesta condici\u00f3n, a recibir de forma oportuna el debido diagn\u00f3stico y tratamiento\ny que, a la larga, esto les garantice una vida mejor.<\/p>\n\n\n\n<p>Como habr\u00e9is visto estos d\u00edas, desde AFASCOL , mediante nuestras Redes Sociales, nos hemos querido sumar hasta campa\u00f1a de sensibilizaci\u00f3n, subiendo fotos y testimonios de nuestros afectados, con S\u00edndrome de Stickler, SEDC y SEMD Strudwich, todas ellas colagenopat\u00edas de Tipo II derivadas de mutaciones en el gen COL2A1 y afectando la creaci\u00f3n de col\u00e1geno de Tipo II en el organismo.<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img data-attachment-id=\"7510\" data-permalink=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/noticia2020eerr_1\/\" data-orig-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_1.jpg?fit=544%2C544&amp;ssl=1\" data-orig-size=\"544,544\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"noticia2020EERR_1\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_1.jpg?fit=300%2C300&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_1.jpg?fit=544%2C544&amp;ssl=1\" loading=\"lazy\" width=\"544\" height=\"544\" src=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_1.jpg?resize=544%2C544\" alt=\"\" class=\"wp-image-7510\" data-recalc-dims=\"1\"\/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img data-attachment-id=\"7509\" data-permalink=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/noticia2020eerr_2\/\" data-orig-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_2.jpg?fit=544%2C544&amp;ssl=1\" data-orig-size=\"544,544\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"noticia2020EERR_2\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_2.jpg?fit=300%2C300&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_2.jpg?fit=544%2C544&amp;ssl=1\" loading=\"lazy\" width=\"544\" height=\"544\" src=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_2.jpg?resize=544%2C544\" alt=\"\" class=\"wp-image-7509\" data-recalc-dims=\"1\"\/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img data-attachment-id=\"7508\" data-permalink=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/noticia2020eerr_3\/\" data-orig-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_3.jpg?fit=544%2C544&amp;ssl=1\" data-orig-size=\"544,544\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"noticia2020EERR_3\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_3.jpg?fit=300%2C300&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_3.jpg?fit=544%2C544&amp;ssl=1\" loading=\"lazy\" width=\"544\" height=\"544\" src=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_3.jpg?resize=544%2C544\" alt=\"\" class=\"wp-image-7508\" data-recalc-dims=\"1\"\/><\/figure><\/div>\n\n\n\n<p>Hab\u00e9is\nconocido a una parte importante de nuestra gran familia, pero no a todos, muchos\nde ellos, tambi\u00e9n afectados y otros familiares, que d\u00eda a d\u00eda luchan por\nmejorar la calidad de vida de nuestros afectados, por &nbsp;la igualdad social, por la defensa de\nsus derechos, por la equidad a la hora de recibir un diagn\u00f3stico precoz&nbsp; y tratamiento eficaz. <\/p>\n\n\n\n<p>Nuestra\nmenci\u00f3n especial, a todos nuestros padres , madres y hermanos, que se desviven\npor sus hijos, que sufren con ellos esta dura situaci\u00f3n, que luchan a su lado\narrop\u00e1ndolos, cuid\u00e1ndolos,&nbsp; que sin\ndudarlo ni un momento se cambiar\u00edan por ellos, una y mil veces. Por el esfuerzo\nque conlleva conciliar, una vida familiar, y una vida&nbsp; laboral, &nbsp;con innumerables&nbsp; visitas m\u00e9dicas, con las sesiones de\nrehabilitaci\u00f3n, fisioterapia, atenci\u00f3n precoz, logopeda\u2026\u2026 y que lo hacen con\namor, constancia y dedicaci\u00f3n.&nbsp; Que se sienten\norgullosos y se ven recompensados, cuando ven la fortaleza de su hijo, que tambi\u00e9n\nlucha a su lado. <\/p>\n\n\n\n<p>Desde AFASCOL, queremos tambi\u00e9n dar las gracias, a FEDER, por su compromiso y solidaridad con las personas que conviven con alguna enfermedad poco frecuente, a todo el equipo m\u00e9dico que nos ayuda en nuestra ardua labor y que nos ha permitido ser cada vez m\u00e1s visibles, \u00a0que gracias a ellos hemos podido arropar, guiar y dar respuesta a aquellas familias reci\u00e9n diagnosticadas.\u00a0<\/p>\n\n\n\n<p><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-medium\"><img data-attachment-id=\"7506\" data-permalink=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/noticia2020eerr_5\/\" data-orig-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_5.jpg?fit=788%2C591&amp;ssl=1\" data-orig-size=\"788,591\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"noticia2020EERR_5\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_5.jpg?fit=300%2C225&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_5.jpg?fit=788%2C591&amp;ssl=1\" loading=\"lazy\" width=\"300\" height=\"225\" src=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_5-300x225.jpg?resize=300%2C225&#038;ssl=1\" alt=\"\" class=\"wp-image-7506\" data-recalc-dims=\"1\"\/><\/figure><\/div>\n\n\n\n<p>Y como no, dar las gracias a la Fundaci\u00f3n Alpe, por su ayuda y orientaci\u00f3n.<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img data-attachment-id=\"7505\" data-permalink=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/noticia2020eerr_6\/\" data-orig-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_6.jpg?fit=639%2C479&amp;ssl=1\" data-orig-size=\"639,479\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"noticia2020EERR_6\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_6.jpg?fit=300%2C225&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_6.jpg?fit=639%2C479&amp;ssl=1\" loading=\"lazy\" width=\"639\" height=\"479\" src=\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_6.jpg?resize=639%2C479\" alt=\"\" class=\"wp-image-7505\" data-recalc-dims=\"1\"\/><\/figure><\/div>\n","protected":false},"excerpt":{"rendered":"<p>El d\u00eda m\u00e1s raro del a\u00f1o, justamente es hoy 29 de Febrero y\u00a0 se celebra\u00a0 el D\u00eda Mundial de las Enfermedades Raras. El objetivo de su conmemoraci\u00f3n, es crear conciencia y ayudar a todas las personas que padecen esta condici\u00f3n, a recibir de forma oportuna el debido diagn\u00f3stico y tratamiento y que, a la larga,&hellip;&nbsp;<a href=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/\" class=\"\" rel=\"bookmark\">Leer m\u00e1s &raquo;<span class=\"screen-reader-text\">D\u00eda mundial de las Enfermedades Raras<\/span><\/a><\/p>\n","protected":false},"author":6,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"spay_email":"","jetpack_publicize_message":"D\u00eda mundial de las Enfermedades Raras en AFASCOL","jetpack_is_tweetstorm":false,"jetpack_publicize_feature_enabled":true},"categories":[34,54],"tags":[],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v19.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>D\u00eda mundial de las Enfermedades Raras - AFASCOL<\/title>\n<meta name=\"description\" content=\"Celebramos en AFASCOL el d\u00eda mundial de las enfermedades raras\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00eda mundial de las Enfermedades Raras - AFASCOL\" \/>\n<meta property=\"og:description\" content=\"Celebramos en AFASCOL el d\u00eda mundial de las enfermedades raras\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:site_name\" content=\"AFASCOL\" \/>\n<meta property=\"article:published_time\" content=\"2020-02-29T17:46:26+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2020-02-29T17:46:37+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg\" \/>\n<meta name=\"author\" content=\"Marcos\" \/>\n<meta name=\"twitter:card\" content=\"summary\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marcos\" \/>\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\":\"WebSite\",\"@id\":\"https:\/\/www.afascol.org\/#website\",\"url\":\"https:\/\/www.afascol.org\/\",\"name\":\"AFASCOL\",\"description\":\"Asociaci\u00f3n de Familiares y Afectados por el S\u00edndrome de Stickler, SEDC y otras Colagenopat\u00edas Tipo II (COL2A1)\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.afascol.org\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"es\"},{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#primaryimage\",\"url\":\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&ssl=1\",\"contentUrl\":\"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&ssl=1\",\"width\":200,\"height\":200},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#webpage\",\"url\":\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/\",\"name\":\"D\u00eda mundial de las Enfermedades Raras - AFASCOL\",\"isPartOf\":{\"@id\":\"https:\/\/www.afascol.org\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#primaryimage\"},\"datePublished\":\"2020-02-29T17:46:26+00:00\",\"dateModified\":\"2020-02-29T17:46:37+00:00\",\"author\":{\"@id\":\"https:\/\/www.afascol.org\/#\/schema\/person\/69b12a09ef66cb32deb7786274ca33b7\"},\"description\":\"Celebramos en AFASCOL el d\u00eda mundial de las enfermedades raras\",\"breadcrumb\":{\"@id\":\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\/\/www.afascol.org\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"D\u00eda mundial de las Enfermedades Raras\"}]},{\"@type\":\"Person\",\"@id\":\"https:\/\/www.afascol.org\/#\/schema\/person\/69b12a09ef66cb32deb7786274ca33b7\",\"name\":\"Marcos\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\/\/www.afascol.org\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/40167033ab807fb4b5b894385eeba9f8?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/40167033ab807fb4b5b894385eeba9f8?s=96&d=mm&r=g\",\"caption\":\"Marcos\"},\"url\":\"https:\/\/www.afascol.org\/index.php\/author\/marcos-costalagogmail-com\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"D\u00eda mundial de las Enfermedades Raras - AFASCOL","description":"Celebramos en AFASCOL el d\u00eda mundial de las enfermedades raras","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:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/","og_locale":"es_ES","og_type":"article","og_title":"D\u00eda mundial de las Enfermedades Raras - AFASCOL","og_description":"Celebramos en AFASCOL el d\u00eda mundial de las enfermedades raras","og_url":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/","og_site_name":"AFASCOL","article_published_time":"2020-02-29T17:46:26+00:00","article_modified_time":"2020-02-29T17:46:37+00:00","og_image":[{"url":"https:\/\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg"}],"author":"Marcos","twitter_card":"summary","twitter_misc":{"Escrito por":"Marcos","Tiempo de lectura":"2 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebSite","@id":"https:\/\/www.afascol.org\/#website","url":"https:\/\/www.afascol.org\/","name":"AFASCOL","description":"Asociaci\u00f3n de Familiares y Afectados por el S\u00edndrome de Stickler, SEDC y otras Colagenopat\u00edas Tipo II (COL2A1)","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.afascol.org\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"es"},{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#primaryimage","url":"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&ssl=1","contentUrl":"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2020\/02\/noticia2020EERR_4.jpg?fit=200%2C200&ssl=1","width":200,"height":200},{"@type":"WebPage","@id":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#webpage","url":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/","name":"D\u00eda mundial de las Enfermedades Raras - AFASCOL","isPartOf":{"@id":"https:\/\/www.afascol.org\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#primaryimage"},"datePublished":"2020-02-29T17:46:26+00:00","dateModified":"2020-02-29T17:46:37+00:00","author":{"@id":"https:\/\/www.afascol.org\/#\/schema\/person\/69b12a09ef66cb32deb7786274ca33b7"},"description":"Celebramos en AFASCOL el d\u00eda mundial de las enfermedades raras","breadcrumb":{"@id":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.afascol.org\/index.php\/2020\/02\/29\/dia-mundial-de-las-enfermedades-raras\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/www.afascol.org\/"},{"@type":"ListItem","position":2,"name":"D\u00eda mundial de las Enfermedades Raras"}]},{"@type":"Person","@id":"https:\/\/www.afascol.org\/#\/schema\/person\/69b12a09ef66cb32deb7786274ca33b7","name":"Marcos","image":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/www.afascol.org\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/40167033ab807fb4b5b894385eeba9f8?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/40167033ab807fb4b5b894385eeba9f8?s=96&d=mm&r=g","caption":"Marcos"},"url":"https:\/\/www.afascol.org\/index.php\/author\/marcos-costalagogmail-com\/"}]}},"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p7ASOv-1X1","jetpack-related-posts":[{"id":7605,"url":"https:\/\/www.afascol.org\/index.php\/2021\/02\/27\/juega-con-afascol-para-celebrar-el-dia-de-las-enfermedades-raras\/","url_meta":{"origin":7503,"position":0},"title":"Juega con AFASCOL para celebrar el dia de las enfermedades Raras","date":"27\/02\/2021","format":false,"excerpt":"Ma\u00f1ana, 28 de Febrero de 2021 se celebra el dia de las enfermedades raras y este a\u00f1o hemos decidido celebrarlo haciendo algo que le gusta a todos, sobre todo a los m\u00e1s jovenes. Un mont\u00f3n de streamers nos acompa\u00f1aran en Twitch con muchos juegos. A partir de las 11:00h junto\u2026","rel":"","context":"En \u00abafascol\u00bb","img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2021\/02\/IMG-20210220-WA0000.jpg?resize=350%2C200&ssl=1","width":350,"height":200},"classes":[]},{"id":7038,"url":"https:\/\/www.afascol.org\/index.php\/2018\/03\/15\/visibilizando-las-colagenopatias-tipo-ii-entrevista-al-dr-fernando-santos-en-el-programa-enfermedades-raras-de-gestiona-radio-con-antonio-armas\/","url_meta":{"origin":7503,"position":1},"title":"Visibilizando las Colagenopat\u00edas Tipo II. Entrevista al Dr. Fernando Santos en el programa Enfermedades Raras de Gestiona Radio con Antonio Armas","date":"15\/03\/2018","format":"gallery","excerpt":"El pasado d\u00eda 8 de marzo de 2018 tuvimos la enorme fortuna de participar en el programa Enfermedades Raras de Gestiona Radio, liderado por Antonio Armas. El Dr. Fernando Santos, explico en qu\u00e9 consisten estas patolog\u00edas, haciendo especial hincapi\u00e9 en la Displasia Esp\u00f3ndiloepifisaria Cong\u00e9nita, y explicando con detalle algunas de\u2026","rel":"","context":"En \u00abBlogs\u00bb","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":6705,"url":"https:\/\/www.afascol.org\/index.php\/2017\/04\/02\/afascol-estuvo-en-la-primera-reunion-feder-femisemi\/","url_meta":{"origin":7503,"position":2},"title":"@AFASCOL estuvo en la Primera Reunion FEDER-FEMI\/SEMI","date":"02\/04\/2017","format":false,"excerpt":"@AFASCOL estuvo en la Primera Reunion FEDER-FEMI\/SEMI | AFASCOL ONG | Pulse | LinkedIn Los pasados 31 de marzo y 1 de abril tuvo lugar en Madrid la Primera reuni\u00f3n Cient\u00edfico Familiar FEDER-FEMI para adultos afectados por una enfermedad minoritaria, fruto de un acuerdo entre ambas asociaciones, y donde se\u2026","rel":"","context":"En \u00abafascol\u00bb","img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2017\/04\/AAEAAQAAAAAAAAmhAAAAJDNlZjg5YjFmLTIwOTYtNDczMi05ZDY2LTcyNDcyMDMzNGE5MA.png?fit=376%2C202&ssl=1&resize=350%2C200","width":350,"height":200},"classes":[]},{"id":6826,"url":"https:\/\/www.afascol.org\/index.php\/2017\/05\/30\/resumen-de-la-primera-jornada-de-colagenopatias-tipo-ii-el-27-de-mayo-dia-de-sensibilizacion-de-las-colagenopatias-tipo-ii\/","url_meta":{"origin":7503,"position":3},"title":"Resumen de la Primera Jornada de Colagenopat\u00edas Tipo II el 27 de Mayo, \u201cD\u00eda de Sensibilizaci\u00f3n de las Colagenopat\u00edas Tipo II\u201d","date":"30\/05\/2017","format":"image","excerpt":"\u00a0 \u00a0 El pasado 27 de Mayo de 2017, tuvo lugar en el Hospital Universitario La Paz, la Primera Jornada de Colagenopat\u00edas Tipo II.\u00a0 Sesenta asistentes, entre ellos afectados, y profesionales de la salud interesados en la materia, escucharon las interesantes ponencias de los diferentes especialistas m\u00e9dicos que participaron y\u2026","rel":"","context":"En \u00abBlogs\u00bb","img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.afascol.org\/wp-content\/uploads\/2017\/05\/DSC_7400_reducida.jpg?fit=986%2C653&ssl=1&resize=350%2C200","width":350,"height":200},"classes":[]},{"id":7008,"url":"https:\/\/www.afascol.org\/index.php\/2018\/02\/05\/afascol-estuvo-en-la-primera-jornada-de-la-unidad-multidisciplinar-de-displasias-esqueleticas-umde-en-el-hospital-universitario-la-paz\/","url_meta":{"origin":7503,"position":4},"title":"@AFASCOL estuvo en la Primera Jornada de la Unidad Multidisciplinar de Displasias Esquel\u00e9ticas (UMDE), en el Hospital Universitario La Paz","date":"05\/02\/2018","format":false,"excerpt":"Hoy hemos asistido a la Primera Jornada de la Unidad Multidisciplinar de Displasias Esquel\u00e9ticas. Como asociaci\u00f3n, formada por padres y madres de afectados, en nuestro caso, por Colagenopat\u00edas Tipo II, evidentemente nos hemos perdido muchos de los t\u00e9rminos m\u00e9dicos que se han manejado en la jornada, pero con eso y\u2026","rel":"","context":"En \u00abBlogs\u00bb","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":6764,"url":"https:\/\/www.afascol.org\/index.php\/2017\/05\/27\/27-de-mayo-es-el-dia-de-la-sensibilizacion-sobre-las-colagenopatiastipoii\/","url_meta":{"origin":7503,"position":5},"title":"27 de Mayo es el Dia de la Sensibilizaci\u00f3n sobre las #ColagenopatiasTipoII","date":"27\/05\/2017","format":"video","excerpt":"Es un corto camino el que llevamos recorrido, desde que el d\u00eda 27 de Mayo de 2016 firmamos el acta de Constituci\u00f3n de AFASCOL (Asociaci\u00f3n de Familiares y Afectados por el S\u00edndrome de Stickler, SEDC y otras Colagenopat\u00edas Tipo II). Llenos de ilusi\u00f3n y energ\u00eda, con el \u00fanico motivo de\u2026","rel":"","context":"En \u00abBlogs\u00bb","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]}],"_links":{"self":[{"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/posts\/7503"}],"collection":[{"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/comments?post=7503"}],"version-history":[{"count":2,"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/posts\/7503\/revisions"}],"predecessor-version":[{"id":7512,"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/posts\/7503\/revisions\/7512"}],"wp:attachment":[{"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/media?parent=7503"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/categories?post=7503"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.afascol.org\/index.php\/wp-json\/wp\/v2\/tags?post=7503"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}