{"id":3477,"date":"2020-09-06T22:06:06","date_gmt":"2020-09-06T22:06:06","guid":{"rendered":"http:\/\/alianzapacientes.org\/?p=3477"},"modified":"2020-09-06T22:06:06","modified_gmt":"2020-09-06T22:06:06","slug":"dia-mundial-de-la-concienciacion-de-duchenne","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2020\/09\/06\/dia-mundial-de-la-concienciacion-de-duchenne\/","title":{"rendered":"D\u00eda Mundial de la Concienciaci\u00f3n de Duchenne"},"content":{"rendered":"<p>Hoy se celebra el <strong>D\u00eda Mundial de la Concienciaci\u00f3n de Duchenne<\/strong>, una de las denominadas \u201cenfermedades poco frecuentes\u201d o \u201cenfermedades raras\u201d, debido a su baja incidencia. Con el objetivo de visibilizar esta enfermedad, <a href=\"https:\/\/www.adm.org.ar\/?fbclid=IwAR2jzSicolyK2UuErTA6XcoSAzCYDoQ93nwNkCdsHGuoMEXTvPnIIJqWmrE\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Asociaci\u00f3n Distrofia Muscular Argentina &#8211; ADM<\/strong><\/a> impulsa la campa\u00f1a bajo el slogan de la <strong><a href=\"https:\/\/www.worldduchenne.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">World Duchenne Organization (WDO)<\/a><\/strong>, <strong>\u201cJuntos somos m\u00e1s fuertes\u201d<\/strong>.<\/p>\n<p>Se estima que esta enfermedad afecta a 1 de cada 3.800 a 6.300 varones reci\u00e9n nacidos vivos, y seg\u00fan proyecciones brindadas por ADM, en el pa\u00eds afecta a unas 2.000 personas, siendo la distrofia muscular m\u00e1s diagnosticada durante la infancia.<\/p>\n<p>La DMD es una enfermedad de origen gen\u00e9tico que se produce por alteraciones en la secuencia de un gen. Ese gen genera prote\u00ednas con importantes funciones en el tejido muscular, que cuando no pueden producirse correctamente causan distrofia.<\/p>\n<p>&nbsp;<\/p>\n<p><iframe title=\"ADM Argentina - 2019\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/NU9Rde9gA-I?start=45&#038;feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<p>El presidente de la Asociaci\u00f3n Distrofia Muscular, Santiago Ord\u00f3\u00f1ez, se\u00f1al\u00f3: \u201c<em>es fundamental que trabajemos para lograr un diagn\u00f3stico temprano y para visibilizar las historias de los pacientes y sus familias. Los avances en investigaci\u00f3n est\u00e1n permitiendo desarrollos de nuevas opciones terap\u00e9uticas, que abren una gran ventana de esperanza para quienes padecen esta enfermedad<\/em>\u201d.<\/p>\n<p>&nbsp;<\/p>\n<h3><span style=\"color: #800080;\">Campa\u00f1a de concientizaci\u00f3n<\/span><\/h3>\n<p>Desde ADM informaron que la campa\u00f1a comenzar\u00e1 el lunes 7 de septiembre con la convocatoria al lanzamiento digital de globos y continuar\u00e1 durante toda la semana. Se incentivar\u00e1 a la comunidad a participar compartiendo contenidos en redes sociales incluyendo globos rojos (dibujos, stickers, o incluso filtros), junto a los <em>hashtags<\/em> #JuntosSomosM\u00e1sFuertes y #WDAD20.<\/p>\n<p>&nbsp;<\/p>\n<figure id=\"attachment_3478\" aria-describedby=\"caption-attachment-3478\" style=\"width: 349px\" class=\"wp-caption aligncenter\"><img fetchpriority=\"high\" decoding=\"async\" class=\"wp-image-3478\" src=\"http:\/\/alianzapacientes.org\/wp-content\/uploads\/2020\/09\/sabado-300x300.png\" alt=\"El s\u00e1bado 12 a las 16 horas se har\u00e1 un evento virtual\" width=\"349\" height=\"349\" srcset=\"https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/09\/sabado-300x300.png 300w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/09\/sabado-1024x1024.png 1024w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/09\/sabado-150x150.png 150w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/09\/sabado-768x768.png 768w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/09\/sabado.png 1080w\" sizes=\"(max-width: 349px) 100vw, 349px\" \/><figcaption id=\"caption-attachment-3478\" class=\"wp-caption-text\">El s\u00e1bado 12 a las 16 horas se har\u00e1 un evento virtual<\/figcaption><\/figure>\n<p>&nbsp;<\/p>\n<p>El cierre ser\u00e1 el s\u00e1bado 12 de septiembre, con un Webinar abierto y gratuito a las 16hs en el que se brindar\u00e1n detalles sobre la enfermedad, c\u00f3mo realizar la detecci\u00f3n temprana, consejos para la vida diaria, testimonios de vida y resiliencia. Ser\u00e1 conducido por el periodista Guillermo Lobo, que ya ha acompa\u00f1ado a\u00f1os atr\u00e1s con la iniciativa.<\/p>\n<p>Segu\u00ed la campa\u00f1a y toda la informaci\u00f3n en la p\u00e1gina de Facebook: <a href=\"https:\/\/www.facebook.com\/adm.argentina\/?ref=page_internal\" target=\"_blank\" rel=\"noopener noreferrer\">ADM Argentina<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hoy se celebra el D\u00eda Mundial de la Concienciaci\u00f3n de Duchenne, una de las denominadas \u201cenfermedades poco frecuentes\u201d o \u201cenfermedades raras\u201d, debido a su baja incidencia. Con el objetivo de visibilizar esta enfermedad, Asociaci\u00f3n Distrofia Muscular Argentina &#8211; ADM impulsa la campa\u00f1a bajo el slogan de la World Duchenne Organization (WDO), \u201cJuntos somos m\u00e1s fuertes\u201d. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":3479,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[7],"tags":[],"class_list":["post-3477","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-poco-frecuentes"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>D\u00eda Mundial de la Concienciaci\u00f3n de Duchenne - Alianza Argentina de Pacientes - ALAPA<\/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:\/\/www.marianakirby.com\/alapa\/2020\/09\/06\/dia-mundial-de-la-concienciacion-de-duchenne\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00eda Mundial de la Concienciaci\u00f3n de Duchenne - Alianza Argentina de Pacientes - ALAPA\" \/>\n<meta property=\"og:description\" content=\"Hoy se celebra el D\u00eda Mundial de la Concienciaci\u00f3n de Duchenne, una de las denominadas \u201cenfermedades poco frecuentes\u201d o \u201cenfermedades raras\u201d, debido a su baja incidencia. Con el objetivo de visibilizar esta enfermedad, Asociaci\u00f3n Distrofia Muscular Argentina &#8211; ADM impulsa la campa\u00f1a bajo el slogan de la World Duchenne Organization (WDO), \u201cJuntos somos m\u00e1s fuertes\u201d. 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