{"id":284887,"date":"2016-02-29T15:42:38","date_gmt":"2016-02-29T15:42:38","guid":{"rendered":"http:\/\/www.pressenza.com\/es\/?p=284887"},"modified":"2016-02-29T15:45:03","modified_gmt":"2016-02-29T15:45:03","slug":"29f-yotambiensoyrara","status":"publish","type":"post","link":"https:\/\/www.pressenza.com\/es\/2016\/02\/29f-yotambiensoyrara\/","title":{"rendered":"#yotambiensoyRARA"},"content":{"rendered":"<p>El d\u00eda 29 de febrero se celebra el <strong>D\u00eda Internacional de las Enfermedades Raras<\/strong>. Con \u00e9ste y otros twetts, se est\u00e1 llamando la atenci\u00f3n sobre un sinf\u00edn de enfermedades que cuentan con la incomprensi\u00f3n y la falta de apoyo suficiente a nivel gubernamental o el inter\u00e9s por investigar por parte de empresas.<\/p>\n<p>Ya es significativo que sea este d\u00eda, de este mes. Muy simb\u00f3lico.<\/p>\n<p>Se trata de enfermedades que, en principio, sufren muy pocas personas, aunque solo en Espa\u00f1a, el conjunto de ellas afecta a tres millones de personas.<\/p>\n<p>El hecho de que cada una de ellas la sufra un n\u00famero, en general, \u00abpeque\u00f1o\u00bb de la poblaci\u00f3n, supone que es tard\u00edo el diagn\u00f3stico por desconocido o por los recortes actuales en la sanidad p\u00fablica, por ejemplo, y que a estas enfermedades no se destinen recursos suficientes para ser investigadas, ni para atender a los enfermos y a sus familiares.<\/p>\n<p>Es un ejemplo muy claro de c\u00f3mo en algo que no resulta comercial, por los pocos \u00abconsumidores\u00bb potenciales, no se invierte. Y esta afirmaci\u00f3n es aplicable a laboratorios farmace\u00faticos, empresas dedicadas a tecnolog\u00eda facilitadora para estos enfermos, y tambi\u00e9n y, sobre todo, a los diferentes gobiernos que miran muchas veces para otro lado y\/o que postergan las ayudas necesarias y urgentes para estas familias.<\/p>\n<p>Hablamos de familias porque finalmente, como en tantos otros aspectos, son quienes han de dar respuesta a un problema que deber\u00eda ser de la sociedad entera.<\/p>\n<p>Hoy, en todo el mundo, organizaciones que intentan apoyar a estos enfermos, creadas en muchos casos por los mismos familiares, tratan de alzar la voz en nombre de quienes, en numerosas ocasiones, no tienen capacidad para levantarla.<\/p>\n<p>Hay datos en internet. En Espa\u00f1a,\u00a0<cite class=\"_Rm\"><\/cite>pueden encontrar informaci\u00f3n en http:\/\/<a href=\"http:\/\/www.enfermedades-raras.org\/\">www.enfermedades-raras.org\/<\/a>.<\/p>\n<p>Millones de personas viven ajenas a este tipo de enfermedades, desconociendo incluso que se las denomine as\u00ed.<\/p>\n<p>Nosotros queremos expresar aqu\u00ed nuestra solidaridad con estos enfermos y sus familiares m\u00e1s cercanos.<\/p>\n<p>En numerosos casos, cada d\u00eda es un reto \u00ablevantarse\u00bb, no rendirse a la fatalidad, al dolor, a la impotencia, al deterioro, al cansancio, a la insolidaridad, a la incomprensi\u00f3n de los m\u00e1s cercanos, a la p\u00e9rdida del empleo, a separaciones&#8230; y m\u00e1s. Todo ello como consecuencia de estas mal llamadas \u00abenfermedades raras\u00bb<\/p>\n<p>Admiramos a quienes cada d\u00eda aprenden de la misma enfermedad y se niegan a aceptar ser tratados como diferentes, no permitiendo ser discriminados y no aceptando la ayuda caritativa, sino que reclaman sus derechos y que los gobernantes asuman su responsabilidad.<\/p>\n<p>Hoy y todos los d\u00edas <strong>#yotambiensoyRARA<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El d\u00eda 29 de febrero se celebra el D\u00eda Internacional de las Enfermedades Raras. Con \u00e9ste y otros twetts, se est\u00e1 llamando la atenci\u00f3n sobre un sinf\u00edn de enfermedades que cuentan con la incomprensi\u00f3n y la falta de apoyo suficiente&hellip;<\/p>\n","protected":false},"author":188,"featured_media":284918,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11389,39,1239],"tags":[24551,24550,24549],"class_list":["post-284887","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-contenido-original","category-internacional","category-salud","tag-yotambiensoyrara","tag-29f","tag-dia-internacional-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>#yotambiensoyRARA<\/title>\n<meta name=\"description\" content=\"El d\u00eda 29 de febrero se celebra el D\u00eda Internacional de las Enfermedades Raras. 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