{"id":11272,"date":"2025-06-29T06:45:02","date_gmt":"2025-06-29T06:45:02","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2025\/06\/29\/ana-dominguez-neurologa-es-mucho-mas-dificil-complejo-costoso-investigar-enfermedades-raras\/"},"modified":"2025-06-29T06:45:02","modified_gmt":"2025-06-29T06:45:02","slug":"ana-dominguez-neurologa-es-mucho-mas-dificil-complejo-costoso-investigar-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2025\/06\/29\/ana-dominguez-neurologa-es-mucho-mas-dificil-complejo-costoso-investigar-enfermedades-raras\/","title":{"rendered":"Ana Dom\u00ednguez, neur\u00f3loga: \u00abEs mucho m\u00e1s dif\u00edcil, complejo y costoso investigar en enfermedades raras\u00bb"},"content":{"rendered":"

Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

Se calcula que existen unas 7.000 enfermedades raras<\/a><\/b>. En su mayor\u00eda gen\u00e9ticas, al menos la mitad tiene alg\u00fan tipo de afectaci\u00f3n neurol\u00f3gica, por ello, desde la Sociedad Espa\u00f1ola de Neurolog\u00eda (SEN)<\/a>, quieren aunarlas todas en el Grupo de Estudio de Neurogen\u00e9tica y Enfermedades Raras. Capitaneado por la neur\u00f3loga Ana Mar\u00eda Dom\u00ednguez Mayoral<\/b>, entre sus objetivos tienen crear un registro nacional de este tipo de enfermedades y aunar criterios para mejorar el manejo y la calidad de vida de los pacientes, que en la actualidad se encuentran \u2018hu\u00e9rfanos\u2019 de tratamientos eficaces.<\/p>\n

M\u00e1s de la mitad de las estas enfermedades tienen s\u00edntomas neurol\u00f3gicos<\/h1>\n

En enfermedades raras se suele hablar de odisea diagn\u00f3stica, porque hay veces que se tarda hasta 10 a\u00f1os en diagnosticar a un paciente<\/h1>\n

Son pocas, pero algunas de estas enfermedades s\u00ed tienen tratamiento, por eso es importante identificarlas precozmente<\/h1>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5720320\/0\/ana-dominguez-neurologa-es-mucho-mas-dificil-complejo-costoso-investigar-enfermedades-raras\/<\/p>\n","protected":false},"excerpt":{"rendered":"

Ana Mar\u00eda Dom\u00ednguez Mayoral es la coordinadora del Grupo de Estudio de Neurogen\u00e9tica y Enfermedades Raras de la Sociedad Espa\u00f1ola de Neurolog\u00eda (SEN).<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[],"class_list":["post-11272","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\nAna Dom\u00ednguez, neur\u00f3loga: "Es mucho m\u00e1s dif\u00edcil, complejo y costoso investigar en enfermedades raras" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2025\/06\/29\/ana-dominguez-neurologa-es-mucho-mas-dificil-complejo-costoso-investigar-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ana Dom\u00ednguez, neur\u00f3loga: "Es mucho m\u00e1s dif\u00edcil, complejo y costoso investigar en enfermedades raras" - 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