{"id":4071,"date":"2021-05-31T08:50:56","date_gmt":"2021-05-31T06:50:56","guid":{"rendered":"https:\/\/f101g.org\/enquete-over-diagnostische-fouten-bij-zeldzame-ziekten-in-belgie\/"},"modified":"2021-05-31T08:50:56","modified_gmt":"2021-05-31T06:50:56","slug":"enquete-over-diagnostische-fouten-bij-zeldzame-ziekten-in-belgie","status":"publish","type":"post","link":"https:\/\/f101g.org\/nl\/enquete-over-diagnostische-fouten-bij-zeldzame-ziekten-in-belgie\/","title":{"rendered":"Enqu\u00eate over diagnostische fouten bij zeldzame ziekten in Belgi\u00eb"},"content":{"rendered":"<h3>Professor Sandy Tubeuf van de UCL voert een &#8216;onderzoek naar diagnostische fouten bij zeldzame ziekten in Belgi\u00eb&#8217; uit.<\/h3>\n<p>De 101 Genomes Foundation ondersteunt dit onderzoek voor 100%. Ze hoopt dat haar bevindingen zullen helpen bij het vinden van oplossingen om de duur van deze verschrikkelijke diagnosefout te verminderen.<\/p>\n<p>Concreet hielp Ludivine bij het opstellen van de vragenlijst en Romain stemde ermee in om Aur\u00e9liens verhaal te vertellen aan de televisiezender BX1 om het te promoten.<\/p>\n<p>Dit was een gelegenheid om erop te wijzen dat, hoewel zeldzame ziekten een klein percentage van de bevolking treffen, ze vooral jonge kinderen treffen, wat betekent dat niet slechts \u00e9\u00e9n persoon, maar hun ouders, broers en zussen en grootouders worden getroffen. Rekening houdend met deze &#8216;externaliteiten&#8217;, be\u00efnvloeden zeldzame ziekten het leven van veel mensen in Belgi\u00eb:<\/p>\n<p>[embedyt]  https:\/\/www.youtube.com\/watch?v=vIYoVo7VmUQ[\/embedyt]<\/p>\n<p>Je kunt meedoen via de volgende links:&nbsp;<\/p>\n<ul>\n<li><a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk\" target=\"_blank\" rel=\"noopener\">Als je de ouder bent van een kind met een zeldzame ziekte: 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\">Als je zelf een zeldzame ziekte hebt: https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_3q2A35LEks4cbD8<\/a><\/li>\n<\/ul>\n<hr>\n<p>Het onderzoek van professor Tubeauf kreeg uitgebreide media-aandacht. Dit artikel is beschikbaar op de BX1 website op het volgende adres: <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>Hieronder ook weergegeven:<\/p>\n<h3><em>\u201eEen onderzoeker lanceert een enqu\u00eate om zeldzame ziekten beter te begrijpen<\/em><\/h3>\n<div class=\"content\">\n<div class=\"content\">\n<h4><em><strong>Tussen 6% en 8% van de Belgen wordt getroffen door deze weinig bekende ziekten.<br \/>\n<\/strong><\/em><\/h4>\n<p><em>Sciensano en het Institut des maladies rares melden<strong>&nbsp;6<\/strong><strong>.000 tot 8.000 zeldzame ziekten in Belgi\u00eb<\/strong>. Toch zijn deze ziekten en hun symptomen bij de meeste artsen en het grote publiek nauwelijks bekend of bekend. Een precieze diagnose wordt vaak gesteld na een lange periode van wachten, ook wel<strong>\u201ediagnostic wandering<\/strong>\u201d genoemd. Dit kan enkele weken of maanden duren, of zelfs enkele jaren.<\/em><\/p>\n<p><em><strong>Sandy Tubeuf<\/strong>, onderzoeker aan de UCLouvain (Institut de recherche sant\u00e9 et soci\u00e9t\u00e9 -IRSS en Institut de recherches \u00e9conomiques et sociales -IRES),&nbsp;<strong>lanceert een nieuwe enqu\u00eate<\/strong>&nbsp;onder pati\u00ebnten met zeldzame ziekten in Belgi\u00eb.<\/em><\/p>\n<h4><strong><em>Een ongekend onderzoek<\/em><\/strong><\/h4>\n<p><em><strong>Het doel<\/strong> van dit onderzoek&nbsp;is tweeledig: inzicht krijgen in de zorgpaden van pati\u00ebnten tot aan de diagnose van een zeldzame ziekte en meten hoeveel tijd het kost om deze ziekten te diagnosticeren en wat de impact hiervan is op de gevoelens van pati\u00ebnten.<\/em><\/p>\n<p><em>Er is nog geen onderzoek gedaan naar deze kwestie in Belgi\u00eb en internationale studies naar de geassocieerde factoren en de gevoelens van pati\u00ebnten zijn zeldzaam.<\/em><\/p>\n<p><em>\u25ba Iedereen die aan een zeldzame ziekte lijdt en in Belgi\u00eb woont, is<strong>&nbsp;uitgenodigd om de enqu\u00eate<\/strong>&nbsp;<strong>in te vullen<\/strong> (ouders of verzorgers mogen dit doen voor kinderen onder de 18 jaar). Het is beschikbaar in het Frans en Nederlands:<\/em><\/p>\n<ul>\n<li><em>voor mensen met een zeldzame ziekte:&nbsp;<a href=\"https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk\">https:\/\/uclouvainph.qualtrics.com\/jfe\/form\/SV_0jsuIKCZfouNpBk<\/a><\/em><\/li>\n<li><em>voor ouders en verzorgers van iemand met een zeldzame ziekte:&nbsp;<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 Verslag:&nbsp;<strong>Marie-No\u00eblle Dinant<\/strong>,&nbsp;<strong>Nicolas Scheenaerts<\/strong>&nbsp;en&nbsp;<\/em><strong><br \/>\n  <em>Corinne De Beul<\/em><br \/>\n<\/strong>\u201d<\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Professor Sandy Tubeuf van de UCL voert een &#8216;onderzoek naar diagnostische fouten bij zeldzame ziekten in Belgi\u00eb&#8217; uit. De 101 &hellip;<\/p>\n","protected":false},"author":2,"featured_media":3399,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_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}},"categories":[],"tags":[],"class_list":["post-4071","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Enqu\u00eate over diagnostische fouten bij zeldzame ziekten in Belgi\u00eb%page%-101 Genomes Foundation - Genomics voor zeldzame ziekten<\/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\/nl\/enquete-over-diagnostische-fouten-bij-zeldzame-ziekten-in-belgie\/\" \/>\n<meta property=\"og:locale\" content=\"nl_BE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Enqu\u00eate over diagnostische fouten bij zeldzame ziekten in Belgi\u00eb%page%-101 Genomes Foundation - Genomics voor zeldzame ziekten\" \/>\n<meta property=\"og:description\" content=\"Professor Sandy Tubeuf van de UCL voert een &#8216;onderzoek naar diagnostische fouten bij zeldzame ziekten in Belgi\u00eb&#8217; uit. 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