{"id":5661,"date":"2020-05-14T06:37:36","date_gmt":"2020-05-14T06:37:36","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/05\/14\/nos-adherimos-al-dia-mundial-del-angioedema-hereditario\/"},"modified":"2020-05-14T06:37:36","modified_gmt":"2020-05-14T06:37:36","slug":"nos-adherimos-al-dia-mundial-del-angioedema-hereditario","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/05\/14\/nos-adherimos-al-dia-mundial-del-angioedema-hereditario\/","title":{"rendered":"Nos adherimos al D\u00eda Mundial del Angioedema Hereditario"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>En el marco del D\u00eda Mundial del Angioedema Hereditario (AEH) que se celebra hoy, 16 de mayo para visibilizar esta patolog\u00eda poco frecuente y potenciar la transformaci\u00f3n social. Adem\u00e1s, desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) queremos mostrar su apoyo a todas las personas que conviven con esta patolog\u00eda y a sus familias sum\u00e1ndose a la campa\u00f1a de este a\u00f1o.<\/p>\n<p>El Angioedema Hereditario es una enfermedad vascular hereditaria rara, caracterizada por una acumulaci\u00f3n excesiva de los l\u00edquidos o flu\u00eddos del organismo que da lugar a \u00e1reas de obstrucci\u00f3n en los vasos linf\u00e1ticos o las venas.<\/p>\n<p>La obstrucci\u00f3n del flujo normal de la sangre o de la linfa conduce a la hinchaz\u00f3n temporal de la piel y de las membranas mucosas.<\/p>\n<p>Los s\u00edntomas se desarrollan por la deficiencia o el funcionamiento incorrecto de ciertas prote\u00ednas que ayudan a mantener el flujo normal de l\u00edquidos a trav\u00e9s de los capilares (vasos sangu\u00edneos de di\u00e1metro muy peque\u00f1o). En algunos casos los flu\u00eddos pueden acumularse en otros \u00f3rganos internos.<\/p>\n<p>Desde FEDER, quieren poner en valor el trabajo de las entidades que representan y mejoran el d\u00eda a d\u00eda de las personas con Angioedema Familiar en Espa\u00f1a, ya que a trav\u00e9s de su esfuerzo se consigue una difusi\u00f3n de conocmientos, la promocion de reuniones entre pacientes y profesionales sanitario y perseguir una disponibilidad de asistencia m\u00e9dica completa y de alta calidad, todo ello, es gracias a: Asociaci\u00f3n Espa\u00f1ola de Angioedema Familiar por Deficit C1<\/p>\n<p><span style=\"text-decoration: underline\">Campa\u00f1a de visibilizaci\u00f3n &#8216;Somos Impredicibles&#8217;<\/span><\/p>\n<p>La Asociaci\u00f3n Espa\u00f1ola de Angioedema Familiar por Deficiencia del Inhibidor de C1 (AEDAF), con la colaboraci\u00f3n de Takeda, ha puesto en marcha la campa\u00f1a \u201cSomos Impredecibles\u201d. La iniciativa tiene como finalidad concienciar a la poblaci\u00f3n sobre la realidad del angioedema hereditario, una enfermedad rara que afecta a una de cada 50.000 personas en todo el mundo. Aprovechando la conmemoraci\u00f3n del D\u00eda Mundial de esta patolog\u00eda, que se celebra el pr\u00f3ximo s\u00e1bado 16 de mayo, AEDAF ha producido un v\u00eddeo testimonial de pacientes (<a href=\"https:\/\/youtu.be\/Inj2KALwfe0\">https:\/\/youtu.be\/Inj2KALwfe0<\/a>) y ha propuesto un reto a los usuarios de la red social Instagram.<\/p>\n<p>\u00daltima actualizaci\u00f3n 14\/05\/2020<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13890-nos-adherimos-al-d%C3%ADa-mundial-del-angioedema-hereditario-que-se\" target=\"_blank\" rel=\"noopener noreferrer\">Nos adherimos al D\u00eda Mundial del Angioedema Hereditario<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; En el marco del D\u00eda Mundial del Angioedema Hereditario (AEH) que se celebra hoy, 16 de mayo para visibilizar esta patolog\u00eda poco frecuente y potenciar la transformaci\u00f3n social. Adem\u00e1s, desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) queremos mostrar su apoyo a [&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-5661","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 adherimos al D\u00eda Mundial del Angioedema Hereditario - 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\/14\/nos-adherimos-al-dia-mundial-del-angioedema-hereditario\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos adherimos al D\u00eda Mundial del Angioedema Hereditario - 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; En el marco del D\u00eda Mundial del Angioedema Hereditario (AEH) que se celebra hoy, 16 de mayo para visibilizar esta patolog\u00eda poco frecuente y potenciar la transformaci\u00f3n social. 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