{"id":4057,"date":"2021-05-31T08:50:56","date_gmt":"2021-05-31T06:50:56","guid":{"rendered":"https:\/\/f101g.org\/encuesta-sobre-errores-de-diagnostico-en-enfermedades-raras-en-belgica\/"},"modified":"2026-08-11T14:12:20","modified_gmt":"2026-08-11T12:12:20","slug":"encuesta-sobre-errores-de-diagnostico-en-enfermedades-raras-en-belgica","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/encuesta-sobre-errores-de-diagnostico-en-enfermedades-raras-en-belgica\/","title":{"rendered":"Encuesta sobre errores de diagn\u00f3stico en enfermedades raras en B\u00e9lgica"},"content":{"rendered":"<h3>El profesor Sandy Tubeuf, de la UCL, est\u00e1 llevando a cabo una \u00abinvestigaci\u00f3n sobre errores de diagn\u00f3stico en enfermedades raras en B\u00e9lgica\u00bb.<\/h3>\n<p>La Fundaci\u00f3n 101 Genomas apoya al 100% esta investigaci\u00f3n. Espera que sus hallazgos ayuden a encontrar soluciones para reducir la duraci\u00f3n de este terrible error de diagn\u00f3stico. <\/p>\n<p>En concreto, Ludivine ayud\u00f3 a elaborar el cuestionario y Romain acept\u00f3 contar la historia de Aur\u00e9lien a la cadena de televisi\u00f3n BX1 para promocionarla.<\/p>\n<p>Esta fue una oportunidad para se\u00f1alar que, aunque las enfermedades raras afectan a un peque\u00f1o porcentaje de la poblaci\u00f3n, afectan sobre todo a ni\u00f1os peque\u00f1os, lo que significa que no es una sola persona sino sus padres, hermanos y abuelos los afectados. Teniendo en cuenta estas \u00abexternalidades\u00bb, las enfermedades raras afectan a la vida de muchas personas en B\u00e9lgica: <\/p>\n<div class=\"relative w-full h-0 pb-[56%]\"><iframe loading=\"lazy\" class=\"absolute top-0 left-0 w-full h-full\" title=\"Une chercheuse lance une enqu\u00eate pour mieux comprendre les maladies rares\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/vIYoVo7VmUQ?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/div>\n<p>Puede participar a trav\u00e9s de los siguientes enlaces:<\/p>\n<ul>\n<li><a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk\" target=\"_blank\" rel=\"noopener\">Si es padre de un ni\u00f1o con una enfermedad rara: https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk<\/a><\/li>\n<li><a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_3q2A35LEks4cbD8\" target=\"_blank\" rel=\"noopener\">Si padece una enfermedad rara: https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_3q2A35LEks4cbD8<\/a><\/li>\n<\/ul>\n<hr>\n<p>El estudio del profesor Tubeuf recibi\u00f3 una amplia cobertura medi\u00e1tica. Este art\u00edculo est\u00e1 disponible en el sitio web de BX1, en la siguiente direcci\u00f3n: <a href=\"https:\/\/bx1.be\/categories\/news\/une-chercheuse-lance-une-enquete-pour-mieux-comprendre-les-maladies-rares\/?fbclid=IwAR21KsQWlz1xJgJOa1I5hsYrywUfmWzND7oipMj2iRs7LApFtlt67BRA31c\" target=\"_blank\" rel=\"noopener\">https:\/\/bx1.be\/categories\/news\/une-chercheuse-lance-une-enquete-pour-mieux-comprendre-les-maladies-rares\/?fbclid=IwAR21KsQWlz1xJgJOa1I5hsYrywUfmWzND7oipMj2iRs7LApFtlt67BRA31c<\/a> <\/p>\n<p>Tambi\u00e9n se reproduce a continuaci\u00f3n:<\/p>\n<h3>\u00ab<em>Un investigador lanza una encuesta para conocer mejor las enfermedades raras<\/em><\/h3>\n<div class=\"content\">\n<div class=\"content\">\n<h4><em><strong>Entre el 6% y el 8% de los belgas est\u00e1n afectados por estas enfermedades poco conocidas.<br \/>\n<\/strong><\/em><\/h4>\n<p><em>Sciensano y el Institut des maladies rares informan<strong> 6.000 a 8.000 enfermedades raras en B\u00e9lgica<\/strong>. Sin embargo, estas enfermedades y sus s\u00edntomas son poco conocidos o reconocidos por la mayor\u00eda de los m\u00e9dicos y el p\u00fablico en general. A menudo, el diagn\u00f3stico preciso se realiza tras un largo periodo de espera, tambi\u00e9n conocido como \u201c<strong>diagn\u00f3stico errante\u201d<\/strong>. Esto puede llevar unas semanas o meses, o incluso varios a\u00f1os.   <\/em><\/p>\n<p><em><strong>Sandy Tubeuf<\/strong>, investigadora de la UCLouvain (Institut de recherche sant\u00e9 et soci\u00e9t\u00e9 -IRSS e Institut de recherches \u00e9conomiques et sociales -IRES), <strong>lanza una nueva encuesta<\/strong> entre los pacientes con una enfermedad rara en B\u00e9lgica.<\/em><\/p>\n<h4><strong><em>Un estudio sin precedentes<\/em><\/strong><\/h4>\n<p><em>El <strong>objetivo<\/strong> de esta encuesta es doble: comprender el recorrido asistencial de los pacientes hasta el diagn\u00f3stico de la enfermedad rara y medir los plazos de diagn\u00f3stico de estas enfermedades, as\u00ed como sus consecuencias en la percepci\u00f3n de los pacientes.<\/em><\/p>\n<p><em>Todav\u00eda no se ha realizado ning\u00fan estudio sobre esta cuesti\u00f3n en B\u00e9lgica, y los estudios internacionales sobre los factores asociados y los sentimientos de los pacientes son escasos.<\/em><\/p>\n<p><em>\u25ba Toda persona con una enfermedad rara y que viva en B\u00e9lgica est\u00e1<strong> invitada a responder a la encuesta<\/strong> (los padres o cuidadores pueden hacerlo por los menores de 18 a\u00f1os). Est\u00e1 disponible en franc\u00e9s y neerland\u00e9s: <\/em><\/p>\n<ul>\n<li><em>para las personas con una enfermedad rara: <a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk\">https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk<\/a><\/em><\/li>\n<li><em>para los padres y cuidadores de una persona con una enfermedad rara: <a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_3q2A35LEks4cbD8\">https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_3q2A35LEks4cbD8<\/a><\/em><\/li>\n<\/ul>\n<p><em>\u25a0 Reportaje de <strong>Marie-No\u00eblle Dinant<\/strong>, <strong>Nicolas Scheenaerts<\/strong> y <\/em><strong><em>Corinne De Beul<\/em><\/strong><\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>El profesor Sandy Tubeuf, de la UCL, est\u00e1 llevando a cabo una \u00abinvestigaci\u00f3n sobre errores de diagn\u00f3stico en enfermedades raras &hellip;<\/p>\n","protected":false},"author":2,"featured_media":3403,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[185],"tags":[],"class_list":["post-4057","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-raras"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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