{"id":34504,"date":"2025-08-06T12:37:48","date_gmt":"2025-08-06T10:37:48","guid":{"rendered":"https:\/\/confederaciopenyes.cat\/la-confederacio-mundial-de-penyes-se-une-para-combatir-las-enfermedades-raras-en-los-ninos\/"},"modified":"2025-08-06T12:50:18","modified_gmt":"2025-08-06T10:50:18","slug":"la-confederacio-mundial-de-penyes-se-une-para-combatir-las-enfermedades-raras-en-los-ninos","status":"publish","type":"post","link":"https:\/\/confederaciopenyes.cat\/es\/la-confederacio-mundial-de-penyes-se-une-para-combatir-las-enfermedades-raras-en-los-ninos\/","title":{"rendered":"La Confederaci\u00f3 Mundial de Penyes se une para combatir las enfermedades raras en los ni\u00f1os"},"content":{"rendered":"\n<p>La Confederaci\u00f3, a trav\u00e9s de sus pe\u00f1as y federaciones territoriales, se suma a esta causa para amplificar su alcance y contribuir a mejorar la vida de personas. La mu\u00f1eca Nica, s\u00edmbolo de esperanza para miles de familias, inicia su viaje solidario por Espa\u00f1a con el objetivo de visibilizar y apoyar la lucha contra las enfermedades raras. <a href=\"https:\/\/www.elviajedenica.org\/es\/\"> <strong>Esta iniciativa, impulsada por el Hospital Sant Joan de D\u00e9u y la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER),<\/strong><\/a><strong> <\/strong><strong>busca recaudar fondos para ampliar el acceso a estudios gen\u00e9ticos<\/strong> avanzados a trav\u00e9s de la red \u00danicas, que ya<strong> atiende a m\u00e1s de 30.000 ni\u00f1os en todo el pa\u00eds<\/strong>.<\/p>\n\n<p><strong>Cada mu\u00f1eca Nica lleva un c\u00f3digo QR que permite conocer la historia de la familia que la pone en circulaci\u00f3n y realizar donaciones<\/strong>. El proyecto cuenta con el respaldo de entidades comprometidas con el impacto social y tambi\u00e9n con el apoyo de organizaciones que han demostrado una implicaci\u00f3n activa en causas solidarias. <\/p>\n\n<p>Entre ellas, la Confederaci\u00f3 Mundial de Penyes, que se sum\u00f3 a FEDER <strong>gracias al trabajo constante de su comisi\u00f3n de RSC<\/strong>. FEDER est\u00e1 presidida por <strong>Juan Carri\u00f3n<\/strong>, quien tambi\u00e9n es presidente de la Federaci\u00f3n de Pe\u00f1as Barcelonistas de Murcia y de la Pe\u00f1a Barcelonista de Totana. Este v\u00ednculo facilita<strong> la colaboraci\u00f3n habitual del colectivo de pe\u00f1as <\/strong>en acciones de sensibilizaci\u00f3n sobre estas enfermedades, destacando as\u00ed los valores solidarios que definen el barcelonismo.<a href=\"https:\/\/confederaciopenyes.cat\/es\/la-confederacion-mundial-de-penas-se-une-a-la-declaracion-institucional-del-dia-mundial-de-las-enfermedades-raras\/\"> La Confederaci\u00f3 ya dio apoyo a FEDER en el Dia Mundial de las Enfermedades Raras, el pasado 29 de febrero<\/a>.  <\/p>\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-16018d1d wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-accent-background-color has-background wp-element-button\" href=\"https:\/\/www.elviajedenica.org\/es\/\">\u00a1\u00danete a la donaci\u00f3n!<\/a><\/div>\n<\/div>\n\n<p><\/p>\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-full\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-12.25.26-1.jpeg\"><img decoding=\"async\" width=\"934\" height=\"1010\" data-id=\"34498\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-12.25.26-1.jpeg\" alt=\"\" class=\"wp-image-34498 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-12.25.26-1.jpeg 934w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-12.25.26-1-277x300.jpeg 277w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-12.25.26-1-768x830.jpeg 768w\" data-sizes=\"(max-width: 934px) 100vw, 934px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 934px; --smush-placeholder-aspect-ratio: 934\/1010;\" \/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25.jpeg\"><img decoding=\"async\" width=\"1024\" height=\"576\" data-id=\"34489\" data-src=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25-1024x576.jpeg\" alt=\"\" class=\"wp-image-34489 lazyload\" data-srcset=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25-1024x576.jpeg 1024w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25-300x169.jpeg 300w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25-768x432.jpeg 768w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25-1536x864.jpeg 1536w, https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2025\/08\/WhatsApp-Image-2025-08-06-at-11.17.25.jpeg 1640w\" 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><\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Confederaci\u00f3, a trav\u00e9s de sus pe\u00f1as y federaciones territoriales, se suma a esta causa para amplificar su alcance y contribuir a mejorar la vida de personas. La mu\u00f1eca Nica, s\u00edmbolo de esperanza para miles de familias, inicia su viaje solidario por Espa\u00f1a con el objetivo de visibilizar y apoyar la lucha contra las enfermedades &#8230; <a title=\"La Confederaci\u00f3 Mundial de Penyes se une para combatir las enfermedades raras en los ni\u00f1os\" class=\"read-more\" href=\"https:\/\/confederaciopenyes.cat\/es\/la-confederacio-mundial-de-penyes-se-une-para-combatir-las-enfermedades-raras-en-los-ninos\/\" aria-label=\"Leer m\u00e1s sobre La Confederaci\u00f3 Mundial de Penyes se une para combatir las enfermedades raras en los ni\u00f1os\">Leer m\u00e1s<\/a><\/p>\n","protected":false},"author":4,"featured_media":34488,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[2594,2612,2595,2555],"class_list":["post-34504","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias-es","tag-confederacio-mundial-de-penyes-es-3","tag-feder-es","tag-noticias-es-2","tag-penas-es"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v26.7 (Yoast SEO v27.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>La Confederaci\u00f3 se une para combatir las enfermedades raras- CMP<\/title>\n<meta name=\"description\" content=\"La Confederaci\u00f3 Mundial de Penyes s\u2019adhereix a la campanya de FEDER i l\u2019Hospital Sant Joan de D\u00e9u per donar suport als infants.\" \/>\n<meta name=\"robots\" content=\"index, follow, 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