{"id":29645,"date":"2025-02-28T09:00:00","date_gmt":"2025-02-28T08:00:00","guid":{"rendered":"https:\/\/confederaciopenyes.cat\/la-confederacion-mundial-de-penas-se-une-a-la-declaracion-institucional-del-dia-mundial-de-las-enfermedades-raras\/"},"modified":"2025-02-28T09:33:37","modified_gmt":"2025-02-28T08:33:37","slug":"la-confederacion-mundial-de-penas-se-une-a-la-declaracion-institucional-del-dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/confederaciopenyes.cat\/es\/la-confederacion-mundial-de-penas-se-une-a-la-declaracion-institucional-del-dia-mundial-de-las-enfermedades-raras\/","title":{"rendered":"La Confederaci\u00f3n Mundial de Pe\u00f1as se une a la declaraci\u00f3n institucional del D\u00eda Mundial de las Enfermedades Raras"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Un a\u00f1o m\u00e1s, la Confederaci\u00f3n Mundial de Pe\u00f1as del FC Barcelona, a trav\u00e9s de su Subcomisi\u00f3n de RSC, <strong>se suma en la<a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/Declaracion-DMER-25_.pdf\" target=\"_blank\" rel=\"noreferrer noopener\"> declaraci\u00f3n institucional<\/a> de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) con motivo del<a href=\"https:\/\/www.enfermedades-raras.org\/dia-mundial-de-las-enfermedades-raras-2025\" target=\"_blank\" rel=\"noreferrer noopener\"> D\u00eda Mundial de las Enfermedades Raras<\/a><\/strong>, que se conmemora hoy, 28 de febrero. Este a\u00f1o, la instituci\u00f3n ha querido<strong> focalizar este d\u00eda en todas aquellas personas que conviven con cada enfermedad rara<\/strong>, ya sean pacientes, sus familiares, profesionales sanitarios, cuidadores o investigadores. De este modo, FEDER quiere dar una visibilidad especial a estas personas y evitar que se sientan solas.  <\/p>\n\n<p class=\"wp-block-paragraph\">La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras est\u00e1 presidida por <strong>Juan Carri\u00f3n<\/strong>, que tambi\u00e9n es presidente de la <strong>Federaci\u00f3n de Pe\u00f1as Barcelonistas de Murcia<\/strong> y de la <strong><a href=\"https:\/\/www.totana.com\/pbtotana\/\" target=\"_blank\" rel=\"noreferrer noopener\">Pe\u00f1a Barcelonista de Totana<\/a><\/strong>. Precisamente, esta pe\u00f1a ha llevado a cabo recientemente <strong>varias acciones en el Centro Penitenciario Murcia I y en el Centro de Inserci\u00f3n Social Guillermo Miranda<\/strong>, donde ha sensibilizado a la poblaci\u00f3n reclusa sobre las necesidades ligadas a las enfermedades raras. Adem\u00e1s, en el transcurso del a\u00f1o <strong>es habitual la colaboraci\u00f3n del colectivo de pe\u00f1as barcelonistas en diferentes acciones de sensibilizaci\u00f3n<\/strong> sobre estas patolog\u00edas, subrayando as\u00ed los valores solidarios que definen al barcelonismo.  <\/p>\n\n<figure class=\"wp-block-gallery has-nested-images columns-2 is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0003.jpg\"><img decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"29625\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0003-1024x768.jpg\" alt=\"\" class=\"wp-image-29625 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0003-1024x768.jpg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0003-300x225.jpg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0003-768x576.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0003.jpg 1293w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/768;\" \/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009.jpg\"><img decoding=\"async\" width=\"1024\" height=\"771\" data-id=\"29631\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009-1024x771.jpg\" alt=\"\" class=\"wp-image-29631 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009-1024x771.jpg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009-300x226.jpg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009-768x578.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009-1536x1156.jpg 1536w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0009.jpg 1600w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/771;\" \/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0005.jpg\"><img decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"29633\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0005-1024x768.jpg\" alt=\"\" class=\"wp-image-29633 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0005-1024x768.jpg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0005-300x225.jpg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0005-768x576.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0005.jpg 1488w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/768;\" \/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007.jpg\"><img decoding=\"async\" width=\"1024\" height=\"576\" data-id=\"29637\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007-1024x576.jpg\" alt=\"\" class=\"wp-image-29637 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007-1024x576.jpg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007-300x169.jpg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007-768x432.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007-1536x864.jpg 1536w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0007.jpg 1628w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/576;\" \/><\/a><\/figure>\n<\/figure>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<h6 class=\"wp-block-heading\" id=\"h-investigacio-diagnostic-precoc-i-acces-a-medicaments\"><strong>Investigaci\u00f3n, diagn\u00f3stico precoz y acceso a medicamentos<\/strong><\/h6>\n\n<p class=\"wp-block-paragraph\">Tal como reclama FEDER en su declaraci\u00f3n institucional, la lucha contra las enfermedades raras requiere avances especialmente en tres \u00e1mbitos. En primer lugar, se necesitan sistemas de incentivaci\u00f3n fiscal que <strong>impulsen la investigaci\u00f3n sobre estas patolog\u00edas<\/strong>; en segundo lugar, dedicar recursos para el <strong>diagn\u00f3stico precoz y preciso <\/strong>de estas enfermedades; y en tercero, conseguir un <strong>acceso a los medicamentos r\u00e1pido y en condiciones de equidad <\/strong>en comparaci\u00f3n con el resto de enfermedades. FEDER tambi\u00e9n subraya la importancia de la asistencia social en todos estos casos.  <\/p>\n\n<p class=\"wp-block-paragraph\">Las enfermedades raras, o de baja prevalencia, son aquellas de las que se han diagnosticado 5 o menos casos por cada 10.000 habitantes. Actualmente, se estima que <strong>entre el 6 y el 8% de la poblaci\u00f3n mundial convive con estas enfermedades<\/strong>, lo cual 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 hoy en d\u00eda <strong>supera las 6.400<\/strong>. <\/p>\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001.jpg\"><img decoding=\"async\" width=\"742\" height=\"1024\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001-742x1024.jpg\" alt=\"\" class=\"wp-image-29640 lazyload\" style=\"--smush-placeholder-width: 742px; --smush-placeholder-aspect-ratio: 742\/1024;width:448px;height:auto\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001-742x1024.jpg 742w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001-217x300.jpg 217w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001-768x1060.jpg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001-1113x1536.jpg 1113w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/02\/IMG-20250226-WA0001.jpg 1159w\" data-sizes=\"(max-width: 742px) 100vw, 742px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" \/><\/a><\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Un a\u00f1o m\u00e1s, la Confederaci\u00f3n Mundial de Pe\u00f1as del FC Barcelona, a trav\u00e9s de su Subcomisi\u00f3n de RSC, se suma en la declaraci\u00f3n institucional de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) con motivo del D\u00eda Mundial de las Enfermedades Raras, que se conmemora hoy, 28 de febrero. Este a\u00f1o, la instituci\u00f3n ha querido focalizar &#8230; <a title=\"La Confederaci\u00f3n Mundial de Pe\u00f1as se une a la declaraci\u00f3n institucional del D\u00eda Mundial de las Enfermedades Raras\" class=\"read-more\" href=\"https:\/\/confederaciopenyes.cat\/es\/la-confederacion-mundial-de-penas-se-une-a-la-declaracion-institucional-del-dia-mundial-de-las-enfermedades-raras\/\" aria-label=\"Leer m\u00e1s sobre La Confederaci\u00f3n Mundial de Pe\u00f1as se une a la declaraci\u00f3n institucional del D\u00eda Mundial de las Enfermedades Raras\">Leer m\u00e1s<\/a><\/p>\n","protected":false},"author":4,"featured_media":29624,"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-29645","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 v27.5 (Yoast SEO v27.7) - 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