{"id":343,"date":"2025-09-23T23:46:00","date_gmt":"2025-09-23T23:46:00","guid":{"rendered":"https:\/\/omeganoticias.com\/N\/?p=343"},"modified":"2025-09-25T15:49:55","modified_gmt":"2025-09-25T15:49:55","slug":"puebla-sera-sede-del-congreso-nacional-de-enfermedades-raras-y-discapacidad-2025","status":"publish","type":"post","link":"https:\/\/omeganoticias.com\/N\/uncategorized\/puebla-sera-sede-del-congreso-nacional-de-enfermedades-raras-y-discapacidad-2025\/","title":{"rendered":"Puebla ser\u00e1 sede del Congreso Nacional de Enfermedades Raras y Discapacidad 2025"},"content":{"rendered":"\n<p>Puebla se prepara para recibir, del 25 al 27 de septiembre, el Primer Congreso Nacional de Enfermedades Raras y Discapacidad 2025, un espacio que busca visibilizar los retos que enfrentan miles de pacientes que viven con padecimientos poco comunes.<\/p>\n\n\n\n<p>\u00c1lvaro Vega Tob\u00f3n, presidente de la Asociaci\u00f3n Mexicana de Ataxia de Friedreich (AMAFAC), destac\u00f3 que estas enfermedades suelen ser subdiagnosticadas, poco atendidas y, en muchos casos, sin acceso a tratamientos adecuados, lo que impacta directamente en la calidad de vida de quienes las padecen.<\/p>\n\n\n\n<p>En Puebla, se han identificado al menos dos casos de Ataxia de Friedreich, una enfermedad degenerativa que afecta el sistema nervioso y provoca p\u00e9rdida de movilidad y autonom\u00eda. <\/p>\n\n\n\n<p>El propio hijo de Vega Tob\u00f3n fue diagnosticado en 2013 y hoy se desempe\u00f1a como docente universitario, un ejemplo de resiliencia ante este diagn\u00f3stico.<\/p>\n\n\n\n<p>El congreso, que tendr\u00e1 lugar en el Centro de Vinculaci\u00f3n de la UPAEP, reunir\u00e1 a especialistas, investigadores, familias y pacientes con el prop\u00f3sito de impulsar la investigaci\u00f3n cient\u00edfica, el acompa\u00f1amiento familiar y la inclusi\u00f3n social de quienes enfrentan estas condiciones.\u201cSe trata de hacer visibles a las enfermedades raras y, sobre todo, a las personas que viven con alg\u00fan tipo de limitaci\u00f3n o discapacidad\u201d, subray\u00f3 Vega Tob\u00f3n.<\/p>\n\n\n\n<p>La AMAFAC, fundada en 2016, trabaja en protocolos de acompa\u00f1amiento y orientaci\u00f3n a familias, ya que los tratamientos suelen ser costosos y de dif\u00edcil acceso. Con este encuentro nacional se busca fortalecer redes de apoyo, promover pol\u00edticas p\u00fablicas y abrir un espacio de di\u00e1logo sobre la importancia de la integraci\u00f3n social y la atenci\u00f3n m\u00e9dica oportuna.<\/p>\n\n\n\n<p><\/p>\n\n\n<figure class=\"wp-block-post-featured-image\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1152\" src=\"https:\/\/omeganoticias.com\/N\/wp-content\/uploads\/2025\/09\/IMG_20250923_110928-1-scaled.jpg\" class=\"attachment-post-thumbnail size-post-thumbnail wp-post-image\" alt=\"\" style=\"object-fit:cover;\" srcset=\"https:\/\/omeganoticias.com\/N\/wp-content\/uploads\/2025\/09\/IMG_20250923_110928-1-scaled.jpg 2560w, https:\/\/omeganoticias.com\/N\/wp-content\/uploads\/2025\/09\/IMG_20250923_110928-1-300x135.jpg 300w, https:\/\/omeganoticias.com\/N\/wp-content\/uploads\/2025\/09\/IMG_20250923_110928-1-1024x461.jpg 1024w, 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estas&#8230;<\/p>\n","protected":false},"author":2,"featured_media":345,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-343","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Puebla ser\u00e1 sede del Congreso Nacional de Enfermedades Raras y Discapacidad 2025 - Noticias Virales<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/omeganoticias.com\/N\/uncategorized\/puebla-sera-sede-del-congreso-nacional-de-enfermedades-raras-y-discapacidad-2025\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" 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