{"id":3654,"date":"2018-04-16T09:18:18","date_gmt":"2018-04-16T09:18:18","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/16\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\/"},"modified":"2018-04-16T09:18:18","modified_gmt":"2018-04-16T09:18:18","slug":"feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/16\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\/","title":{"rendered":"FEDER se adhiere al D\u00eda Internacional del S\u00edndrome de Pompe"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-size: 11.97px;line-height: 1.3\">El 15 de abril, se celebra el D\u00eda Internacional de la Enfermedad de Pompe. La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma a esta importante celebraci\u00f3n y hace p\u00fablico su apoyo a todas las personas que conviven con esta enfermedad raras, sus familias y a todas las entidades que trabajan d\u00eda a d\u00eda con el fin de mejorar la calidad de vida de los pacientes.<\/span><\/p>\n<p>La celebraci\u00f3n de este d\u00eda tiene como objetivo primordial informar y concientizar a la sociedad sobre los retos que tienen que afrontar todos los d\u00edas los pacientes y adem\u00e1s hacer que el mundo centre su atenci\u00f3n en la investigaci\u00f3n para avanzar en el tratamiento y manejo de la enfermedad.<\/p>\n<p>La enfermedad de Pompe o glucogenosis es un una enfermedad que afecta principalmente a los m\u00fasculos respiratorios y esquel\u00e9ticos y su grado de gravedad es variable. Puede afectar a 1 de cada 57 000 adultos y a 1 de cada 138 000 ni\u00f1os. Muchos de los pacientes presentan cansancio f\u00edsico sin causa aparente y debilitamiento muscular sobre todo en los miembros inferiores.<\/p>\n<p>En este d\u00eda, FEDER quiere resaltar el trabajo que realizan diferentes asociaciones de pacientes al apostar por medidas que promuevan la investigaci\u00f3n y de esta forma garantizar un mejor diagn\u00f3stico de la enfermedad de Pompe y sobre todo por brindar esperanza y alegr\u00eda a los pacientes y sus familias, actores importantes para avanzar hacia grandes cambios en la investigaci\u00f3n no solo de esta enfermedad sino de todas las enfermedades raras.<\/p>\n<p>Destacamos la labor de&nbsp;<span style=\"font-size: 11.97px;font-style: normal;font-weight: normal;line-height: 15.561px\">la Asociaci\u00f3n Espa\u00f1ola de Enfermos de Glucogenosis, la Asociaci\u00f3n de Enfermos Neuromusculares de Bizkaia y la Asociaci\u00f3n de Enfermedades Neuromusculares de Andaluc\u00eda.&nbsp;<\/span><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 16 de abril de 2018<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/10414-feder-celebra-el-d%C3%ADa-internacional-de-pompe\" target=\"_blank\">FEDER se adhiere al D\u00eda Internacional del S\u00edndrome de Pompe<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El 15 de abril, se celebra el D\u00eda Internacional de la Enfermedad de Pompe. La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma a esta importante celebraci\u00f3n y hace p\u00fablico su apoyo a todas las personas que conviven con esta enfermedad raras, [&hellip;]<\/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-3654","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER se adhiere al D\u00eda Internacional del S\u00edndrome de Pompe - 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\/2018\/04\/16\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER se adhiere al D\u00eda Internacional del S\u00edndrome de Pompe - 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; El 15 de abril, se celebra el D\u00eda Internacional de la Enfermedad de Pompe. La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma a esta importante celebraci\u00f3n y hace p\u00fablico su apoyo a todas las personas que conviven con esta enfermedad raras, [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/04\/16\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\/\" \/>\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=\"2018-04-16T09:18:18+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\\\/2018\\\/04\\\/16\\\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/16\\\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"FEDER se adhiere al D\u00eda Internacional del S\u00edndrome de Pompe\",\"datePublished\":\"2018-04-16T09:18:18+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/16\\\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\\\/\"},\"wordCount\":341,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/16\\\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/16\\\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/04\\\/16\\\/feder-se-adhiere-al-dia-internacional-del-sindrome-de-pompe\\\/\",\"name\":\"FEDER se adhiere al D\u00eda Internacional del S\u00edndrome de Pompe - 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