{"id":4076,"date":"2021-05-31T08:50:56","date_gmt":"2021-05-31T06:50:56","guid":{"rendered":"https:\/\/f101g.org\/survey-on-diagnostic-error-in-rare-diseases-in-belgium\/"},"modified":"2026-08-11T13:13:22","modified_gmt":"2026-08-11T11:13:22","slug":"survey-on-diagnostic-error-in-rare-diseases-in-belgium","status":"publish","type":"post","link":"https:\/\/f101g.org\/en\/survey-on-diagnostic-error-in-rare-diseases-in-belgium\/","title":{"rendered":"Survey on diagnostic error in rare diseases in Belgium"},"content":{"rendered":"<h3>Professor Sandy Tubeuf of UCL is leading a &#8216;survey on diagnostic errance in rare diseases in Belgium&#8217;.<\/h3>\n<p>The 101 Genomes Foundation provides 100% support for this research. She hopes that her findings will help to identify solutions for reducing the duration of the dreaded diagnosis wandering. <\/p>\n<p>In concrete terms, Ludivine took part in producing the questionnaire and Romain agreed to tell Aur\u00e9lien&#8217;s story to the BX1 television channel to promote it.<\/p>\n<p>This was an opportunity to point out that, although rare diseases affect a small percentage of the population, they mainly affect young children, which means that it&#8217;s not just one person but their parents, siblings and grandparents who are affected. Taking these &#8220;externalities&#8221; into account, rare diseases affect the lives of many people in Belgium: <\/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>You can participate via the following links:<\/p>\n<ul>\n<li><a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk\" target=\"_blank\" rel=\"noopener\">If you are the parent of a child with a rare disease: 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\">If you yourself suffer from a rare disease: https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_3q2A35LEks4cbD8<\/a><\/li>\n<\/ul>\n<hr>\n<p>Professor Tubeuf&#8217;s study received extensive media coverage. We report here only the article available on the BX1 website at the following address: <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>Also reproduced below:<\/p>\n<h3>&#8220;<em>A researcher launches a survey to better understand rare diseases<\/em><\/h3>\n<div class=\"content\">\n<div class=\"content\">\n<h4><em><strong>6 to 8% of Belgians are affected by these little-known diseases.<br \/>\n<\/strong><\/em><\/h4>\n<p><em>Sciensano and the Institut des maladies rares report <strong>6,000 to 8,000 rare diseases in Belgium<\/strong>. Yet these illnesses and their symptoms are little-known and little-recognized by most doctors and the general public. A precise diagnosis is often made after a long waiting period, also known as &#8220;<strong>diagnostic wandering<\/strong>&#8220;. This can take a few weeks or months, or even several years.   <\/em><\/p>\n<p><em><strong>Sandy Tubeuf<\/strong>, researcher at UCLouvain (Institut de recherche sant\u00e9 et soci\u00e9t\u00e9 -IRSS and Institut de recherches \u00e9conomiques et sociales -IRES), <strong>launches a new survey<\/strong> of rare disease patients in Belgium.<\/em><\/p>\n<h4><strong><em>An unprecedented survey<\/em><\/strong><\/h4>\n<p><em><strong>The objective<\/strong> of this survey is twofold: to understand the patient care pathway up to the diagnosis of the rare disease and to measure the diagnostic delays for these diseases as well as their consequences on patient feelings.<\/em><\/p>\n<p><em>No studies have yet been carried out on this issue in Belgium, and international studies on the associated factors and patients&#8217; feelings are rare.<\/em><\/p>\n<p><em>\u25ba Anyone suffering from a rare disease and living in Belgium is <strong>invited to respond to the survey<\/strong> (parents or caregivers can do so for those under 18). It is available in French and Dutch: <\/em><\/p>\n<ul>\n<li><em>for people with a rare disease: <a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk\">https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk<\/a><\/em><\/li>\n<li><em>for parents and caregivers of a person with a rare disease: <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 Report by <strong>Marie-No\u00eblle Dinant<\/strong>, <strong>Nicolas Scheenaerts<\/strong> and <\/em><strong><em>Corinne De Beul<\/em><\/strong><\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Professor Sandy Tubeuf of UCL is leading a &#8216;survey on diagnostic errance in rare diseases in Belgium&#8217;. The 101 Genomes &hellip;<\/p>\n","protected":false},"author":2,"featured_media":3400,"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":"{title}\n\n{excerpt}\n\n{url}","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},"_wpas_customize_per_network":false,"jetpack_post_was_ever_published":false},"categories":[171],"tags":[],"class_list":["post-4076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Survey on diagnostic error in rare diseases in Belgium - 101 Genomes Foundation - Genomics for Rare Diseases<\/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:\/\/f101g.org\/en\/survey-on-diagnostic-error-in-rare-diseases-in-belgium\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Survey on diagnostic error in rare diseases in Belgium - 101 Genomes Foundation - Genomics for Rare Diseases\" \/>\n<meta property=\"og:description\" content=\"Professor Sandy Tubeuf of UCL is leading a &#8216;survey on diagnostic errance in rare diseases in Belgium&#8217;. 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