{"id":4456,"date":"2019-06-06T05:49:28","date_gmt":"2019-06-06T05:49:28","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/06\/nos-adherimos-al-dia-europeo-de-la-hemocromatosis\/"},"modified":"2019-06-06T05:49:28","modified_gmt":"2019-06-06T05:49:28","slug":"nos-adherimos-al-dia-europeo-de-la-hemocromatosis","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/06\/nos-adherimos-al-dia-europeo-de-la-hemocromatosis\/","title":{"rendered":"Nos adherimos al D\u00eda Europeo de la Hemocromatosis"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El pr\u00f3ximo 7 de junio se celebra el D\u00eda Europeo de la Hemocromatosis con el objetivo de sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n, desde FEDERnos unimos a esta jornada para recordar la importancia de mantener informada a la poblaci\u00f3n sobre la Hemocromatosis, as\u00ed como a las instituciones p\u00fablicas y privadas.<\/p>\n<p>La hemocromatosis se describe a un grupo de patolog\u00edas causadas por el exceso de hierro en el organismo.<\/p>\n<p>Dicho exceso de hierro puede deberse a enfermedades gen\u00e9ticas que afectan a la capacidad de absorci\u00f3n del hierro (hemocromatosis hereditaria, gen\u00e9tica o primaria) o bien tratarse de pacientes que sufren de anemia cr\u00f3nica, en los que el exceso de hierro se debe al dep\u00f3sito paulatino del hierro procedente de transfusiones repetidas (hemocromatosis adquirida o secundaria). Las hemocromatosis hereditarias suelen afectar a varones de m\u00e1s de 50 a\u00f1os.<\/p>\n<p>Son frecuentes los s\u00edntomas asociados a disfunci\u00f3n hep\u00e1tica (debilidad, problemas en la coagulaci\u00f3n de la sangre, retenci\u00f3n h\u00eddrica) ya que el h\u00edgado suele ser el \u00f3rgano m\u00e1s afectado.<\/p>\n<p><i>\u201cDesde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras queremos transmitir todo nuestra fuerza y apoyo a las personas que conviven con Hemocromatosis y a sus familiares. Juntos podremos lograr un diagn\u00f3stico precoz para esta enfermedad poco frecuente\u201d<\/i> Afirma Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>Las entidades que conformar el movimiento asociativo vinculado a la Hemocromatosis se convierten en un pilar fundamental para los pacientes y familiares ya que, trabajan para facilitar la interrelaci\u00f3n entre las personas que tienen esta enfermedad poco frecuente, sus familiares y los profesionales sanitarios. Es por ello que, desde FEDER queremos aplaudir la labor incansable que realizan entidades como la Asociaci\u00f3n Espa\u00f1ola de Hemocromatosis.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Actividades por el D\u00eda Europeo<\/span><\/span><\/p>\n<p>La Asociaci\u00f3n Espa\u00f1ola de Hemocromatosis, con motivo de este D\u00eda Europeo, organizar\u00e1 el pr\u00f3ximo d\u00eda 8 de junio unas actividades l\u00fadicas que consistir\u00e1n en una visita guiada por el Hospital Sant Pau de Barcelona. Adem\u00e1s, ese mismo d\u00eda, tendr\u00e1 lugar la Asamblea General de Socios de la Asociaci\u00f3n donde se podr\u00e1 debatir y resolver dudas sobre esta enfermedad poco frecuente.<\/p>\n<p>A trav\u00e9s de estas actividades, desde la entidad, se reforzar\u00e1 las relaciones internas de la asociaci\u00f3n para as\u00ed crear un sentimiento m\u00e1s fuerte de unidad y hermandad entre las personas que forman la Asociaci\u00f3n Espa\u00f1ola de Hemocromatosis.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 06\/06\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12447-nos-adherimos-al-d%C3%ADa-europeo-de-la-hemocromatosis\" target=\"_blank\" rel=\"noopener noreferrer\">Nos adherimos al D\u00eda Europeo de la Hemocromatosis<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El pr\u00f3ximo 7 de junio se celebra el D\u00eda Europeo de la Hemocromatosis con el objetivo de sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n, desde FEDERnos unimos a esta jornada para recordar la importancia de mantener informada [&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-4456","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos adherimos al D\u00eda Europeo de la Hemocromatosis - 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\/06\/06\/nos-adherimos-al-dia-europeo-de-la-hemocromatosis\/\" \/>\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 Europeo de la Hemocromatosis - 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 pr\u00f3ximo 7 de junio se celebra el D\u00eda Europeo de la Hemocromatosis con el objetivo de sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. 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