{"id":82260,"date":"2022-02-27T12:57:15","date_gmt":"2022-02-27T17:57:15","guid":{"rendered":"https:\/\/papayaso.co\/salud-belleza\/dia-mundial-de-enfermedades-huerfanas-por-que-se-conmemora\/"},"modified":"2022-02-27T12:57:20","modified_gmt":"2022-02-27T17:57:20","slug":"dia-mundial-de-enfermedades-huerfanas-por-que-se-conmemora","status":"publish","type":"post","link":"https:\/\/papayaso.co\/salud-belleza\/dia-mundial-de-enfermedades-huerfanas-por-que-se-conmemora\/","title":{"rendered":"D\u00eda Mundial de Enfermedades Hu\u00e9rfanas: \u00bfpor qu\u00e9 se conmemora?"},"content":{"rendered":" <p>  <\/p> \n<div id=\"mvp-content-main\">\n<p class=\"paragraph\">Este lunes 28 de febrero se celebra el D\u00eda Mundial de Enfermedades Hu\u00e9rfanas<strong> con el prop\u00f3sito de visibilizar las enfermedades poco frecuentes en una parte de la poblaci\u00f3n<\/strong> que seg\u00fan los registros del Ministerio de Salud supera los 60 mil pacientes siendo las mujeres (54%) las m\u00e1s afectadas. <\/p> \n<p class=\"paragraph\">De acuerdo con Dina Grajales, presidenta de la Fundaci\u00f3n Ay\u00fadanos a Respirar y miembro del Observatorio Interinstitucional de Enfermedades Hu\u00e9rfanas (ENHU), actualmente<strong> la principales barreras que enfrentan los pacientes y sus familias son dificultad en obtener un diagn\u00f3stico preciso y temprano,<\/strong> opciones de tratamiento limitado. <\/p> \n<p style=\"text-align: center;\"><em><strong>\u00bfCu\u00e1les son los mitos m\u00e1s comunes sobre el c\u00e1ncer?<\/strong><\/em> <\/p> \n<h2><strong>Barreras para personas que las padecen\u00a0<\/strong><\/h2>\n<p class=\"paragraph\">As\u00ed mismo, otras de las barreras son <strong>poca o ninguna investigaci\u00f3n disponible sobre las enfermedades, dificultad para encontrar m\u00e9dicos o centros de tratamiento, en algunos casos tratamiento de alto costo,<\/strong> dificultad para solicitar servicios m\u00e9dicos, de financiaci\u00f3n o asistencia, sensaci\u00f3n de aislamiento y falta de informaci\u00f3n. <\/p> \n<p class=\"paragraph\">Las enfermedades raras m\u00e1s frecuentes son: <\/p> \n<ul>\n<li class=\"paragraph\">Des\u00f3rdenes en los sistemas neurol\u00f3gicos (como la esclerosis m\u00faltiple, la enfermedad rara m\u00e1s com\u00fan en el pa\u00eds)<\/li>\n<li class=\"paragraph\">Problemas de coagulaci\u00f3n (como la hemofilia)<\/li>\n<li class=\"paragraph\">Las afecciones pulmonares (como la fibrosis qu\u00edstica).<\/li>\n<\/ul>\n<p style=\"text-align: center;\"><em><strong>Muertes por enfermedades del coraz\u00f3n superan las de covid-19 en Colombia<\/strong><\/em> <\/p> \n<h2 class=\"paragraph\"><strong>\u00bfPor qu\u00e9 se conmemora este d\u00eda?<\/strong><\/h2>\n<p class=\"paragraph\">El Observatorio Interinstitucional de Enfermedades Hu\u00e9rfanas, que re\u00fane a 22 asociaciones dedicadas a prestar apoyo integral a los pacientes de diferentes patolog\u00edas, tiene concebido un evento virtual que buscar\u00e1 en el formato de un noticiero<strong> abordar todos los aspectos que contempla este desaf\u00edo de salud p\u00fablica, especialmente en el marco de la pandemia por covid-19<\/strong> que ha aumentado las barreras de acceso de los pacientes y la continuidad de procesos diagn\u00f3sticos y de atenci\u00f3n. <\/p> \n<p class=\"paragraph\">Seg\u00fan Joana Mendivelso, directora de la Fundaci\u00f3n CdLS Colombia, miembro del Observatorio ENHU<strong> en la conmemoraci\u00f3n n\u00famero 14, estar\u00e1n vinculados tomadores de decisi\u00f3n como el Ministerio de Salud, el Ministerio de Educaci\u00f3n, \u00a0la Alta Consejer\u00eda presidencial para la Discapacidad, y el SENA,<\/strong> as\u00ed como los organismos de control sobre el cumplimiento de los derechos de esta poblaci\u00f3n afectada por m\u00e1s de 2.200 enfermedades seg\u00fan el registro del Ministerio de Salud. <\/p> \n<p class=\"paragraph\">\u201cAspiramos a contar con la participaci\u00f3n \u00a0de m\u00e1s de 4.000 personas conectadas al evento entre pacientes, familias y poblaci\u00f3n en general\u201d, se\u00f1al\u00f3. <\/p> \n <p> Colprensa <\/p> \n <p> <a rel=\"nofollow noopener\" href=\"https:\/\/news.google.com\/publications\/CAAqBwgKMNyypQswn729Aw\/sections\/CAQqEAgAKgcICjDcsqULMJ-9vQMwq_mnBw?ceid=CO:es-419&amp;oc=3\" target=\"_blank\" class=\"gn-btn\">Sigue a RTVC Noticias y mantente conectado<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n <p> Fuente: <a href=\"https:\/\/www.rtvcnoticias.com\/enfermedades-huerfanas-colombia-afectados\">RTVC Noticias<\/a> <\/p> \n<div id=\"emojics-root\"><\/div>","protected":false},"excerpt":{"rendered":" <p> Este lunes 28 de febrero se celebra el D\u00eda Mundial de Enfermedades Hu\u00e9rfanas con el prop\u00f3sito de visibilizar las enfermedades poco frecuentes en una parte &hellip;  <\/p> 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