{"id":4183,"date":"2019-01-24T07:16:44","date_gmt":"2019-01-24T07:16:44","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/"},"modified":"2019-01-24T07:16:44","modified_gmt":"2019-01-24T07:16:44","slug":"nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/","title":{"rendered":"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional"},"content":{"rendered":"

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

Nos unimos a las personas y familias que conviven con S\u00edndrome de Moebius en su D\u00eda Internacional que se celebra este 24 de enero.<\/p>\n

Se trata de un s\u00edndrome extremadamente raro en el que dos importantes nervios craneales, el 6\u00ba y 7, no est\u00e1n totalmente desarrollados, causando par\u00e1lisis facial y falta de movimiento en los ojos. Estos nervios controlan tanto el parpadeo y movimiento lateral de los ojos, como las m\u00faltiples expresiones de la cara. Otros puntos del sistema nervioso, incluyendo otros nervios cerebrales que controlan otras sensaciones y funciones, pueden estar tambi\u00e9n afectados.<\/p>\n

En este contexto, la organizaci\u00f3n espa\u00f1ola se une al tejido asociativo que representa a toda la comunidad de familias que conviven con este s\u00edndrome para dar visibilidad a esta enfermedad poco frecuente.<\/p>\n

Desde FEDER hoy queremos reconocer la labor de la Fundaci\u00f3n S\u00edndrome de Moebius de Espa\u00f1a en marcos como \u00e9ste y a trav\u00e9s de la campa\u00f1a #yosonr\u00edopormoebius que han puesto en marcha en redes sociales, pero tambi\u00e9n a lo largo de todo el a\u00f1o, ya que sus objetivos principales son la asistencia social, educativa, divulgativa y moral de todo el colectivo.<\/p>\n

Tambi\u00e9n destacamos la acci\u00f3n de la Fundaci\u00f3n Rafa Puede, que representa tambi\u00e9n enfermedades poco frecuentes y el S\u00edndrome de Moebius, tambi\u00e9n trabaja desde Murcia a nivel nacional para contribuir a la investigaci\u00f3n y la atenci\u00f3n del colectivo.<\/p>\n

M\u00e1s informaci\u00f3n sobre el S\u00edndrome de Moebius<\/h3>\n

Tal y como informa la Fundaci\u00f3n S\u00edndrome de Moebius de Espa\u00f1a, la prevalencia del s\u00edndrome de Moebius en Espa\u00f1a, seg\u00fan el estudio realizado en el Hospital La Fe de Valencia, se sit\u00faa en 1\/500.000 habitantes, y la incidencia anual estar\u00eda en 1\/115.000 nacidos vivos, por lo que se puede calcular que en Espa\u00f1a nacen cada a\u00f1o 3 \u00f3 4 ni\u00f1os con s\u00edndrome de Moebius y podr\u00edan existir alrededor de un total de 200-220 personas con S\u00edndrome de Moebius en toda Espa\u00f1a.<\/p>\n

\u00daltima actualizaci\u00f3n: 24\/01\/2019.<\/p>\n<\/p>\n

Fuente: FEDER Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Nos unimos a las personas y familias que conviven con S\u00edndrome de Moebius en su D\u00eda Internacional que se celebra este 24 de enero. Se trata de un s\u00edndrome extremadamente raro en el que dos importantes nervios craneales, el 6\u00ba y 7, no […]<\/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-4183","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nNos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional - 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\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional - 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: Nos unimos a las personas y familias que conviven con S\u00edndrome de Moebius en su D\u00eda Internacional que se celebra este 24 de enero. Se trata de un s\u00edndrome extremadamente raro en el que dos importantes nervios craneales, el 6\u00ba y 7, no […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/\" \/>\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=\"2019-01-24T07:16:44+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\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional\",\"datePublished\":\"2019-01-24T07:16:44+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/\"},\"wordCount\":394,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/\",\"name\":\"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2019-01-24T07:16:44+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/01\\\/24\\\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional\"}]},{\"@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":"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional - 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\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/","og_locale":"es_ES","og_type":"article","og_title":"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Nos unimos a las personas y familias que conviven con S\u00edndrome de Moebius en su D\u00eda Internacional que se celebra este 24 de enero. Se trata de un s\u00edndrome extremadamente raro en el que dos importantes nervios craneales, el 6\u00ba y 7, no […]","og_url":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2019-01-24T07:16:44+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\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional","datePublished":"2019-01-24T07:16:44+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/"},"wordCount":394,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/","url":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/","name":"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2019-01-24T07:16:44+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/24\/nos-unimos-a-las-familias-con-sindrome-de-moebius-en-su-dia-internacional\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Nos unimos a las familias con S\u00edndrome de Moebius en su D\u00eda Internacional"}]},{"@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\/4183","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=4183"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/4183\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=4183"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=4183"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=4183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}