{"id":4588,"date":"2019-08-14T05:21:10","date_gmt":"2019-08-14T05:21:10","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/14\/nos-unimos-al-dia-mundial-de-la-enfermedad-de-coats\/"},"modified":"2019-08-14T05:21:10","modified_gmt":"2019-08-14T05:21:10","slug":"nos-unimos-al-dia-mundial-de-la-enfermedad-de-coats","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/08\/14\/nos-unimos-al-dia-mundial-de-la-enfermedad-de-coats\/","title":{"rendered":"Nos unimos al D\u00eda Mundial de la Enfermedad de Coats"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El 17 de agosto se celebra el D\u00eda Internacional de la Enfermedad de Coats con el objetivo de visibilizar esta enfermedad poco frecuente que produce una p\u00e9rdida progresiva de la visi\u00f3n. Con motivo de esta jornada, nos unimos para solidarizarnos con los pacientes que conviven con Enfermedad de Coats y con sus familiares.<\/p>\n<p>La Enfermedad de Coats tambi\u00e9n conocida como S\u00edndrome de retinitis exudativa es un proceso cr\u00f3nico que comienza en la juventud y ni\u00f1ez y que se desarrolla de forma lenta y progresiva, produciendo p\u00e9rdida de visi\u00f3n. Esta enfermedad poco frecuente, que suele producirse m\u00e1s en varones que en mujeres, suele manifestarse con una p\u00e9rdida de visi\u00f3n unilateral, con estrabismo, y en fases m\u00e1s avanzadas con desprendimiento de retina. Adem\u00e1s, debido a la alteraci\u00f3n de los vasos sangu\u00edneos de la retina se producen exudados amarillentos.<\/p>\n<p>Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n traslada que <i>\u201cDesde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras nos queremos sumar a esta jornada para acercar a la sociedad la realidad de las personas que conviven con Enfermedad de Coats y la de sus familiares, adem\u00e1s de impulsar la informaci\u00f3n y el conocimiento sobre esta patolog\u00eda\u201d.<\/i><\/p>\n<p>Las entidades que forman el movimiento asociativo se convierte en un apoyo fundamental para todas aquellas personas que conviven con Enfermedad de Coats y para sus familiares ya que, se convierten en la voz de todos ellos, trasladando la realidad de los pacientes y trabajando para intentar reunir a los pocos casos que se diagnostiquen, esto es posible, gracias al esfuerzo y la implicaci\u00f3n de la Asociaci\u00f3n de Familiares y Enfermos de Coats en Espa\u00f1a (AFECE).<\/p>\n<p><span style=\"font-size: 12pt\">Campa\u00f1a del D\u00eda Mundial<\/span><\/p>\n<p>La entidad AFECE realizar\u00e1 una campa\u00f1a de sensibilizaci\u00f3n a trav\u00e9s de sus redes sociales para concienciar a la sociedad sobre esta enfermedad poco frecuente e impulsar la investigaci\u00f3n cient\u00edfica y de esta manera, ofrecer esperanza a las personas que conviven con esta patolog\u00eda. Adem\u00e1s, con esta iniciativa se pretende visibilizar la lucha que realiza el colectivo de pacientes con Enfermedad de Coats y sus familiares.<\/p>\n<p>Por otro lado, la Asociaci\u00f3n Balear de Ni\u00f1os con Enfermedades Raras (ABAIMAR) tambi\u00e9n trabaja por el bienestar de todas aquellas personas con Enfermedad de Coats y sus familiares.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 14\/08\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12801-nos-unimos-al-d%C3%ADa-mundial-de-la-enfermedad-de-coats\" target=\"_blank\" rel=\"noopener noreferrer\">Nos unimos al D\u00eda Mundial de la Enfermedad de Coats<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El 17 de agosto se celebra el D\u00eda Internacional de la Enfermedad de Coats con el objetivo de visibilizar esta enfermedad poco frecuente que produce una p\u00e9rdida progresiva de la visi\u00f3n. Con motivo de esta jornada, nos unimos para solidarizarnos con los [&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-4588","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 unimos al D\u00eda Mundial de la Enfermedad de Coats - 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\/08\/14\/nos-unimos-al-dia-mundial-de-la-enfermedad-de-coats\/\" \/>\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 Mundial de la Enfermedad de Coats - 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 17 de agosto se celebra el D\u00eda Internacional de la Enfermedad de Coats con el objetivo de visibilizar esta enfermedad poco frecuente que produce una p\u00e9rdida progresiva de la visi\u00f3n. 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