{"id":5650,"date":"2020-05-12T07:32:26","date_gmt":"2020-05-12T07:32:26","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/05\/12\/nos-sumamos-al-dia-nacional-del-sindrome-de-ehlers-danlos\/"},"modified":"2020-05-12T07:32:26","modified_gmt":"2020-05-12T07:32:26","slug":"nos-sumamos-al-dia-nacional-del-sindrome-de-ehlers-danlos","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/05\/12\/nos-sumamos-al-dia-nacional-del-sindrome-de-ehlers-danlos\/","title":{"rendered":"Nos sumamos al D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El 15 de mayo se celebra el D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos con el objetivo de visibilizar esta enfermedad poco frecuente, adem\u00e1s de recordar a las autoridades la importancia de la investigaci\u00f3n para obtener un diagn\u00f3stico precoz y un tratamiento eficaz.<\/p>\n<p>Esta enfermedad se caracteriza principalmente por defectos en la producci\u00f3n del col\u00e1geno, resultado del da\u00f1o presente en las enzimas que se encargan de la s\u00edntesis del mismo. La variedad con la que se presenta, hace que se considere heterog\u00e9nea, por lo que se destacan grandes tipos de este padecimiento, cada uno de ellos con signos y s\u00edntomas similares, pero con progresi\u00f3n y evoluci\u00f3n distinta, presentando en com\u00fan, la hiperlaxitud articular, hiperlaxitud articular y la hiperequimosis (Hematomas) por fragilidad de los vasos sangu\u00edneos. Actualmente no existe ning\u00fan tratamiento espec\u00edfico para la misma.<\/p>\n<p>Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras nos queremos adherir a esta mes de sensibilizaci\u00f3n para mostrar todo nuestro apoyo a aquellas personas que conviven con el S\u00edndrome de Ehlers-Danlos y con sus familiares.<\/p>\n<p>La Federaci\u00f3n aplaude la labor que realizan las entidades que componen el movimiento asociativo vinculado a esta enfermedad, las cuales, trabajan a diario para mejorar la calidad de vida de estos pacientes y potenciar los estudios m\u00e9dicos, aspecto esencial para todos ellos, adem\u00e1s de sensibilizar a la sociedad sobre esta patolog\u00eda, impulsando la transformaci\u00f3n social. Esto es posible gracias a entidades como, la Asociaci\u00f3n Nacional del S\u00edndrome de Ehlers Danlos, Hiperlaxitud y Colagenopat\u00edas que se convierten en un apoyo fundamental para todas aquellas personas que buscan asesoramiento y grupos donde poder compartir sus experiencias respecto a la enfermedad.<\/p>\n<p>\u00daltima actualizaci\u00f3n 12\/05\/2020<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13881-nos-sumamos-al-d%C3%ADa-nacional-del-s%C3%ADndrome-de-ehlers-danlos\" target=\"_blank\" rel=\"noopener noreferrer\">Nos sumamos al D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 15 de mayo se celebra el D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos con el objetivo de visibilizar esta enfermedad poco frecuente, adem\u00e1s de recordar a las autoridades la importancia de la investigaci\u00f3n para obtener un diagn\u00f3stico precoz y un tratamiento eficaz. Esta [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-5650","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos sumamos al D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos - 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\/05\/12\/nos-sumamos-al-dia-nacional-del-sindrome-de-ehlers-danlos\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos sumamos al D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos - 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 15 de mayo se celebra el D\u00eda Nacional del S\u00edndrome de Ehlers-Danlos con el objetivo de visibilizar esta enfermedad poco frecuente, adem\u00e1s de recordar a las autoridades la importancia de la investigaci\u00f3n para obtener un diagn\u00f3stico precoz y un tratamiento eficaz. 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