{"id":7266,"date":"2021-06-09T08:54:55","date_gmt":"2021-06-09T08:54:55","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/06\/09\/nos-unimos-al-dia-de-la-ceroidolipofuscinosis\/"},"modified":"2021-06-09T08:54:55","modified_gmt":"2021-06-09T08:54:55","slug":"nos-unimos-al-dia-de-la-ceroidolipofuscinosis","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/06\/09\/nos-unimos-al-dia-de-la-ceroidolipofuscinosis\/","title":{"rendered":"Nos unimos al D\u00eda de la Ceroidolipofuscinosis"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El 9 de junio se celebra el D\u00eda de la Ceroidolipofuscinosis que tiene como objetivo primordial sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n, desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se unen a esta jornada para impulsar la visibilidad de esta patolog\u00eda y apoyar a las personas que conviven con ella.<\/p>\n<p>La presentaci\u00f3n cl\u00ednica var\u00eda ampliamente entre las diferentes formas, pero los signos caracter\u00edsticos son una combinaci\u00f3n de demencia, p\u00e9rdida de visi\u00f3n y epilepsia. Las manifestaciones pueden empezar entre el periodo neonatal y el inicio de la edad adulta dependiendo de la forma. La enfermedad se clasifica en varios subgrupos: cong\u00e9nita, infantil, infantil tard\u00eda, juvenil y adulta (ver estos t\u00e9rminos). Tambi\u00e9n se ha descrito una variante epil\u00e9ptica n\u00f3rdica (epilepsia progresiva-d\u00e9ficit intelectual, tipo finland\u00e9s; ver este t\u00e9rmino), en la cual los problemas de visi\u00f3n est\u00e1n ausentes o son leves y pasan desapercibidos.<\/p>\n<p>Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) nos unimos para apoyar a todos esas personas que conviven con Ceroidolipofuscinosis y a sus familiares. Adem\u00e1s, queremos reconocer la labor de las entidades de pacientes que trabajan para garantizar el bienestar de nuestro colectivo.<\/p>\n<p>Las entidades trabajan de forma incansable para mejorar la calidad de vida de estos pacientes ya que, con su labor, tratan de buscar terapias para esta enfermedad, realizan actividades de concienciaci\u00f3n para que la sociedad conozca m\u00e1s acerca de la Ceroidolipofuscinosis, adem\u00e1s de implicar a los profesionales sanitarios y expertos para potenciar la investigaci\u00f3n y de esta forma, conseguir un tratamiento efectivo para esta enfermedad poco frecuente.<\/p>\n<p>\u00daltima actualizaci\u00f3n 09\/06\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15491-nos-unimos-al-d%C3%ADa-de-la-ceroidolipofuscinosis\" target=\"_blank\" rel=\"noopener\">Nos unimos al D\u00eda de la Ceroidolipofuscinosis<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 9 de junio se celebra el D\u00eda de la Ceroidolipofuscinosis que tiene como objetivo primordial sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n, desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se unen a esta jornada para impulsar [&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-7266","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>Nos unimos al D\u00eda de la Ceroidolipofuscinosis - 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\/2021\/06\/09\/nos-unimos-al-dia-de-la-ceroidolipofuscinosis\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos unimos al D\u00eda de la Ceroidolipofuscinosis - 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: El 9 de junio se celebra el D\u00eda de la Ceroidolipofuscinosis que tiene como objetivo primordial sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. 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