{"id":20078,"date":"2024-02-29T09:30:50","date_gmt":"2024-02-29T08:30:50","guid":{"rendered":"https:\/\/confederaciopenyes.cat\/la-confederacion-mundial-de-penas-se-une-al-dia-mundial-de-las-enfermedades-raras\/"},"modified":"2024-02-29T10:16:47","modified_gmt":"2024-02-29T09:16:47","slug":"confederacio-une-dia-mundial-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/confederaciopenyes.cat\/es\/confederacio-une-dia-mundial-enfermedades-raras\/","title":{"rendered":"La Confederaci\u00f3n Mundial de Pe\u00f1as se une al D\u00eda Mundial de las Enfermedades Raras"},"content":{"rendered":"\n<p>La <strong>Confederaci\u00f3n Mundial de Pe\u00f1as del FC Barcelona<\/strong>, en el \u00e1mbito de su <strong>Subcomisi\u00f3n de RSC<\/strong>, se suma a la <strong><a href=\"https:\/\/www.enfermedades-raras.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER)<\/a><\/strong> para conmemorar el <strong>D\u00eda Mundial de las Enfermedades Raras<\/strong>, que se celebra hoy, <strong>29 de febrero<\/strong>. Bajo el lema <em>\u201cEn enfermedades raras, \u00bfm\u00e1s vale prevenir que curar?\u201d<\/em>, esta federaci\u00f3n quiere <strong>sensibilizar a toda la poblaci\u00f3n sobre la importancia de la investigaci\u00f3n para lograr un diagn\u00f3stico precoz<\/strong> y tambi\u00e9n la necesidad de recursos para frenar la evoluci\u00f3n de este tipo de enfermedades.<\/p>\n\n\n\n<p>La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) est\u00e1 presidida por <strong>Juan Carri\u00f3n<\/strong>, quien tambi\u00e9n es presidente de la <strong>Federaci\u00f3n de Pe\u00f1as Barcelonistas de Murcia<\/strong> y de la <strong>Pe\u00f1a Barcelonista de Totana.<\/strong> A lo largo del a\u00f1o, <strong>es habitual la colaboraci\u00f3n del colectivo pe\u00f1\u00edstico en acciones de sensibilizaci\u00f3n<\/strong> sobre estas enfermedades, subrayando as\u00ed los valores solidarios que definen al barcelonismo. <em>\u201cEn nuestro pa\u00eds, el tiempo medio de diagn\u00f3stico es de 6 a\u00f1os, por lo que para muchas personas es una odisea. Es muy necesario, pues, lograr un <strong>diagn\u00f3stico precoz<\/strong>, y para ello hay que impulsar la medicina gen\u00f3mica personalizada y de precisi\u00f3n, as\u00ed como homogeneizar el n\u00famero de enfermedades raras\u201d<\/em>, explica Carri\u00f3n.<\/p>\n\n\n<div class=\"wp-block-image is-style-default\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021.jpg\"><img decoding=\"async\" width=\"735\" height=\"1024\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021-735x1024.jpg\" alt=\"\" class=\"wp-image-20057 lazyload\" style=\"--smush-placeholder-width: 735px; --smush-placeholder-aspect-ratio: 735\/1024;width:389px;height:auto\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021-735x1024.jpg 735w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021-215x300.jpg 215w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021-768x1069.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021-1103x1536.jpg 1103w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0021.jpg 1149w\" data-sizes=\"(max-width: 735px) 100vw, 735px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" \/><\/a><\/figure>\n<\/div>\n\n\n<p><\/p>\n\n\n\n<h6 class=\"wp-block-heading\" id=\"h-entre-el-6-i-7-de-la-poblacio-mundial\"><strong>Entre el 6 y 7% de la poblaci\u00f3n mundial<\/strong><\/h6>\n\n\n\n<p>Las enfermedades raras, o de baja prevalencia, son aquellas de las que <strong>se han diagnosticado 5 o menos casos por cada 10.000 habitantes<\/strong>. Actualmente, se estima que <strong>entre el 6 y el 7% de la poblaci\u00f3n mundial convive con estas enfermedades<\/strong>, lo que equivale a unos 3 millones de personas en Espa\u00f1a y m\u00e1s de 300 millones a nivel mundial. El n\u00famero de enfermedades raras identificadas a d\u00eda de hoy supera las 6.300.<\/p>\n\n\n\n<p><em>\u201cEs muy dif\u00edcil prevenir la aparici\u00f3n de estas enfermedades, pero s\u00ed que podemos trabajar para acelerar el diagn\u00f3stico y luego frenar su evoluci\u00f3n y agravamiento. Sobre todo, <strong>hay que impulsar la investigaci\u00f3n que pueda aportar futuro y esperanza para todas las personas y familias que conviven con estas patolog\u00edas<\/strong>. Y esto es precisamente lo que queremos transmitir en este D\u00eda Mundial, como uno de los grandes retos y desaf\u00edos que abordamos en nuestro pa\u00eds\u201d<\/em>, afirma Juan Carri\u00f3n, que concluye: <em><strong>\u201cLas raras son las enfermedades, no las personas que las padecen\u201d<\/strong><\/em>.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large is-style-default\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018.jpg\"><img decoding=\"async\" width=\"1024\" height=\"808\" data-id=\"20060\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018-1024x808.jpg\" alt=\"\" class=\"wp-image-20060 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018-1024x808.jpg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018-300x237.jpg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018-768x606.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018-1536x1212.jpg 1536w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0018.jpg 1721w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/808;\" \/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large is-style-default\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0022.jpg\"><img decoding=\"async\" width=\"1024\" height=\"955\" data-id=\"20062\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0022-1024x955.jpg\" alt=\"\" class=\"wp-image-20062 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0022-1024x955.jpg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0022-300x280.jpg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0022-768x717.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2024\/02\/IMG-20240227-WA0022.jpg 1536w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/955;\" \/><\/a><\/figure>\n<\/figure>\n","protected":false},"excerpt":{"rendered":"<p>La Confederaci\u00f3n Mundial de Pe\u00f1as del FC Barcelona, en el \u00e1mbito de su Subcomisi\u00f3n de RSC, se suma a la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) para conmemorar el D\u00eda Mundial de las Enfermedades Raras, que se celebra hoy, 29 de febrero. Bajo el lema \u201cEn enfermedades raras, \u00bfm\u00e1s vale prevenir que curar?\u201d, esta federaci\u00f3n &#8230; <a title=\"La Confederaci\u00f3n Mundial de Pe\u00f1as se une al D\u00eda Mundial de las Enfermedades Raras\" class=\"read-more\" href=\"https:\/\/confederaciopenyes.cat\/es\/confederacio-une-dia-mundial-enfermedades-raras\/\" aria-label=\"Leer m\u00e1s sobre La Confederaci\u00f3n Mundial de Pe\u00f1as se une al D\u00eda Mundial de las Enfermedades Raras\">Leer m\u00e1s<\/a><\/p>\n","protected":false},"author":4,"featured_media":20056,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[2556,2611,2612,2554,2555,2603],"class_list":["post-20078","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias-es","tag-confederacio-mundial-de-penyes-es-2","tag-dia-mundial-de-las-enfermedades-raras","tag-feder-es","tag-noticias-es","tag-penas-es","tag-solidaridad-es-2"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v26.7 (Yoast SEO v27.4) - 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