{"id":102741,"date":"2020-02-29T12:21:22","date_gmt":"2020-02-29T15:21:22","guid":{"rendered":"https:\/\/experienciadevida.com.ar\/portalurbano\/?p=102741"},"modified":"2020-02-29T12:21:22","modified_gmt":"2020-02-29T15:21:22","slug":"dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/experienciadevida.com.ar\/portalurbano\/dia-mundial-de-las-enfermedades-raras\/","title":{"rendered":"D\u00eda Mundial de las Enfermedades Raras"},"content":{"rendered":"<p>El\u00a0<b>D\u00eda Mundial de las Enfermedades Raras<\/b>\u00a0se celebra el \u00faltimo d\u00eda del mes de febrero, desde el a\u00f1o 2008.<\/p>\n<p>https:\/\/www.facebook.com\/nahiara.molina.186\/videos\/774948326247028\/?t=14<\/p>\n<p>https:\/\/www.facebook.com\/nahiara.molina.186\/videos\/774948352913692\/?t=3<\/p>\n<p>El objetivo de su conmemoraci\u00f3n, es crear conciencia y ayudar a todas las personas que padecen esta condici\u00f3n, a recibir de forma oportuna el debido diagn\u00f3stico y tratamiento y que, a la larga, esto les garantice una vida mejor.<\/p>\n<div class=\"iframe-container\" data-type=\"video-external\"><div class=\"yrc-shell-cover yrc-single\" data-yrc-uid=\"69e97fadea6a9\" data-yrc-channel=\"{&quot;meta&quot;:{&quot;user&quot;:&quot;Portal 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data-yrc-setup=\"\"><\/div>\r\n\t\t\t<script data-cfasync=\"false\" type=\"text\/javascript\">\r\n\t\t\t\tif( !window.YRC ) var YRC = {Data:{}};\r\n\t\t\t\tYRC.Data[\"69e97fadea6a9\"] = {\"video\":\"aMYzj6we2mE\"};\r\n\t\t\t\t(function(){\r\n\t\t\t\t\tif(!YRC.loaded){\r\n\t\t\t\t\t    YRC.loaded = true;\r\n\t\t\t\t\t\tfunction YRC_Loader(){\r\n\t\t\t\t\t\t\t\/\/YRC.loaded = true;\r\n\t\t\t\t\t\t\tYRC.is_pro = false;\r\n\t\t\t\t\t\t\tYRC.is_pb = false;\r\n\t\t\t\t\t\t\tYRC.lang = {\"form\":{\"Videos\":\"Videos\",\"Playlists\":\"Playlists\",\"Search\":\"Search\",\"Loading\":\"Loading\",\"more\":\"more\",\"Nothing_found\":\"Nothing found\",\"Prev\":\"Previous\",\"Next\":\"Next\",\"consent_statement\":\"Allow cookies?\",\"consent_button\":\"Allow\",\"consent_privacy_policy\":\"Privacy policy\"},\"fui\":{\"sort_by\":\"Sort 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{if(YRC.EM)YRC.EM.trigger(\"yrc.newchannel\");}\r\n\t\t\t\t}());<\/script><\/div>\n<h2>\u00bfPor qu\u00e9 fue escogida esta fecha?<\/h2>\n<p>Sabemos que el mes de febrero presenta una caracter\u00edstica muy particular y es que, dependiendo del a\u00f1o, puede ser bisiesto o no. Por esta raz\u00f3n, se escogi\u00f3 esta fecha, como una manera simb\u00f3lica de asociar esta rareza, con la enfermedad.<\/p>\n<p>As\u00ed que el\u00a0<b>D\u00eda Mundial de las Enfermedades Raras<\/b>, podr\u00e1 celebrarse cada 28 o 29 de febrero,\u00a0<b><i>tomando en cuenta si es un a\u00f1o bisiesto<\/i><\/b>.<\/p>\n<h2>\u00bfQu\u00e9 son las enfermedades raras?<\/h2>\n<p>Las enfermedades raras son\u00a0<b>patolog\u00edas o trastornos que afectan a una peque\u00f1a parte de la poblaci\u00f3n<\/b>\u00a0y que, por lo general, tienen un componente gen\u00e9tico. Son tambi\u00e9n conocidas como\u00a0<b><i>enfermedades hu\u00e9rfanas<\/i><\/b>.<\/p>\n<p>Las enfermedades presentan una serie de s\u00edntomas particulares, y resulta muy dif\u00edcil diagnosticar cu\u00e1l es su verdadera causa. Estos des\u00f3rdenes o alteraciones que presentan los pacientes, tienen que ser evaluados por un especialista, dependiendo de cada caso.<\/p>\n<p><b>Hoy cerca del 8% de la poblaci\u00f3n mundial, laspadecen<\/b>. Esto traducido en n\u00fameros, corresponde a un aproximado de\u00a0<i>350 millones de afectados<\/i>.<\/p>\n<h2>\u00bfCu\u00e1les son las enfermedades raras m\u00e1s frecuentes?<\/h2>\n<p>Son muchas las enfermedades raras, que lamentablemente afectan a un porcentaje considerable de la poblaci\u00f3n, algunas de ellas son:<\/p>\n<ul>\n<li>S\u00edndrome de Goodpasture.<\/li>\n<li>S\u00edndrome de Alport.<\/li>\n<li>Elefantiasis.<\/li>\n<li>Esclerosis Lateral Amiotr\u00f3fica.<\/li>\n<li>Progeria.<\/li>\n<li>S\u00edndrome de Marfan.<\/li>\n<\/ul>\n<h2>Medicamentos hu\u00e9rfanos para combatir la enfermedad<\/h2>\n<p>Para combatir esta enfermedad, se necesita tratar a los pacientes con los llamados\u00a0<b><i>medicamentos hu\u00e9rfanos<\/i><\/b>. Sirven para prevenir y tratar la patolog\u00eda. Su composici\u00f3n es a base de\u00a0<b><i>compuestos biotecnol\u00f3gicos<\/i><\/b>\u00a0cuya fabricaci\u00f3n resulta muy costosa.<\/p>\n<p>Por este motivo, hoy m\u00e1s que nunca, se necesita la cooperaci\u00f3n de los gobiernos para que estos tratamientos sean accesibles a un mayor n\u00famero de personas que sufren estos trastornos.<\/p>\n<p>Gracias a la\u00a0<b>Organizaci\u00f3n Europea de Enfermedades Raras (<i>EURORDIS<\/i>)<\/b>, la celebraci\u00f3n del\u00a0<b>D\u00eda Mundial de las Enfermedades Raras<\/b>\u00a0comenz\u00f3 a tener m\u00e1s auge y participaci\u00f3n de pa\u00edses como\u00a0<b><i>Estados Unidos, Rusia, China y algunos pa\u00edses de Latinoam\u00e9rica<\/i><\/b>, que comenzaron a sensibilizarse ante la problem\u00e1tica.<\/p>\n<p>En los \u00faltimos a\u00f1os, el compromiso ha sido mayor por parte de estas naciones, donde se han realizado campa\u00f1as, conferencias y programas de sensibilizaci\u00f3n para visibilizar m\u00e1s a las personas a que brinden su ayuda a pacientes que padecen alg\u00fan tipo de enfermedad con estas caracter\u00edsticas.<\/p>\n<p>La\u00a0<b>Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (<i>FEDER<\/i>)<\/b>, es una organizaci\u00f3n espa\u00f1ola que, desde hace a\u00f1os, viene desempe\u00f1ando un importante papel en la lucha contra las enfermedades raras.<\/p>\n<p>Su principal objetivo, ha sido impulsar el estudio e investigaci\u00f3n a fin de encontrar las casusas de estas enfermedades, as\u00ed como el tratamiento m\u00e1s adecuado para estos pacientes y mejorar su calidad de vida.<\/p>\n<p>As\u00ed mismo, gracias a esta organizaci\u00f3n, se ha podido llevar un mensaje a la poblaci\u00f3n en general a trav\u00e9s de campa\u00f1as, medios tecnol\u00f3gicos y las redes sociales para conseguir\u00a0<b>fondos y recursos para la investigaci\u00f3n cient\u00edfica<\/b>.<\/p>\n<p>En 2020, FEDER lanza la campa\u00f1a por el\u00a0<b>D\u00eda Internacional de las Enfermedades Raras<\/b>\u00a0con el lema &#8220;<b><i>Crecer contigo, nuestra esperanza<\/i><\/b>&#8220;, que pondr\u00e1 el acento en el movimiento asociativo que lucha cada d\u00eda por la mejora de la calidad de vida de los m\u00e1s de tres millones de personas que viven en Espa\u00f1a con alguna patolog\u00eda poco frecuente.<\/p>\n<h2>\u00bfC\u00f3mo celebrar el D\u00eda Mundial de las Enfermedades Raras?<\/h2>\n<p>Son muchos los aportes que desde nuestra comunidad, escuela o lugar de trabajo podemos hacer para celebrar el\u00a0<b>D\u00eda Mundial de las Enfermedades Raras<\/b>. Una forma de contribuir, es brindar apoyo a los pacientes y familiares que pasan por esta situaci\u00f3n, ya sea con alg\u00fan tipo de donaci\u00f3n, o simplemente documentarte sobre el tema a trav\u00e9s de la lectura o asistiendo a charlas o alg\u00fan simposio.<\/p>\n<p>As\u00ed mismo, te invitamos a compartir tus experiencias en las redes sociales a trav\u00e9s del hashtag\u00a0<b><i>#D\u00edaMundialdelasEnefermedadesRaras<\/i><\/b>\u00a0<b><i>#EnfermedadesRaras<\/i><\/b>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El\u00a0D\u00eda Mundial de las Enfermedades Raras\u00a0se celebra el \u00faltimo d\u00eda del mes de febrero, desde&#8230;<\/p>\n","protected":false},"author":1,"featured_media":102742,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":""},"categories":[51,45],"tags":[],"nelio_content":{"isAutoShareEnabled":false,"autoShareEndMode":"default","automationSources":{"useContentSentences":true,"useSocialTemplates":true,"useCustomSentences":false,"customSentences":[]},"followers":[1],"suggestedReferences":[],"includedReferences":[],"efiUrl":"","efiAlt":"","highlights":[]},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v20.7 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>D\u00eda Mundial de las Enfermedades Raras -<\/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:\/\/experienciadevida.com.ar\/portalurbano\/dia-mundial-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" 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