{"id":10031,"date":"2026-04-20T08:51:45","date_gmt":"2026-04-20T12:51:45","guid":{"rendered":"https:\/\/loeysdietzcanada.org\/?page_id=10031"},"modified":"2026-07-15T11:35:32","modified_gmt":"2026-07-15T15:35:32","slug":"initiatives-de-recherche","status":"publish","type":"page","link":"https:\/\/loeysdietzcanada.org\/fr\/initiatives-de-recherche\/","title":{"rendered":"Initiatives de recherche"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"10031\" class=\"elementor elementor-10031 elementor-10030\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-4387367 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4387367\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-243eaa7\" data-id=\"243eaa7\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5f88d3d elementor-widget elementor-widget-heading\" data-id=\"5f88d3d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Projets de recherche financ\u00e9s et soutenus par le FSLDC<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-3b901bf3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3b901bf3\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-18fb3f50\" data-id=\"18fb3f50\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-517fa7e5 elementor-widget__width-auto elementor-widget elementor-widget-text-editor\" data-id=\"517fa7e5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"font-weight: 400;\">La Fondation du Syndrome de Loeys-Dietz Canada soutient et finance des initiatives de recherche innovatrices du syndrome de Loeys-Dietz (SLD) et d\u2019autres maladies connexes.\u00a0<\/span><\/p><p><span style=\"font-weight: 400;\"><strong>La Fondation soutient les chercheurs<\/strong> par le biais de programmes de <\/span><b>subventions de la recherche au Canada<\/b><span style=\"font-weight: 400;\"> et \u00e0 l\u2019international. De surcro\u00eet, la Fondation d\u00e9veloppe en collaboration avec les experts un nouveau registre canadien.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-240ab58e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"240ab58e\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-3d665f31\" data-id=\"3d665f31\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-4b53900f elementor-widget elementor-widget-heading\" data-id=\"4b53900f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Registre CAN-ACT<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-33b349ec elementor-widget elementor-widget-spacer\" data-id=\"33b349ec\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-346a19c8 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"346a19c8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Le <strong>Registre canadien des aortopathies et des maladies h\u00e9r\u00e9ditaires du tissu conjonctif (CAN-ACT)<\/strong> est le premier registre p\u00e9diatrique du genre au Canada consacr\u00e9 aux personnes atteintes de <strong>maladies h\u00e9r\u00e9ditaires de l\u2019aorte thoracique (MHAT)<\/strong>, notamment le <strong>syndrome de Loeys-Dietz (SLD)<\/strong>, le <strong>syndrome de Marfan (SM)<\/strong>, le <strong>syndrome d\u2019Ehlers-Danlos vasculaire (SEDv)<\/strong> et d\u2019autres maladies rares du tissu conjonctif.<\/p><p>Le Registre CAN-ACT est une base de donn\u00e9es nationale s\u00e9curis\u00e9e, centralis\u00e9e et r\u00e9gie selon les normes \u00e9thiques, qui recueille des donn\u00e9es g\u00e9notypiques et ph\u00e9notypiques aupr\u00e8s d\u2019enfants et de jeunes vivant avec une maladie h\u00e9r\u00e9ditaire de l\u2019aorte thoracique partout au Canada. Les renseignements recueillis comprennent les sympt\u00f4mes, les variants g\u00e9n\u00e9tiques, les examens d\u2019imagerie diagnostique, les strat\u00e9gies th\u00e9rapeutiques, le mode de vie et l\u2019activit\u00e9 physique, la qualit\u00e9 de vie ainsi que les r\u00e9sultats cliniques \u00e0 long terme.<\/p><p>En harmonisant syst\u00e9matiquement les donn\u00e9es provenant de plusieurs \u00e9tablissements, le registre constitue une solide plateforme de donn\u00e9es probantes qui permet de :<\/p><ul><li>\u00e9clairer et am\u00e9liorer la prise de d\u00e9cision clinique;<\/li><li>orienter l\u2019\u00e9laboration de normes de soins;<\/li><li>favoriser la recherche sur les maladies rares de l\u2019aorte.<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-477c5792 elementor-widget-mobile__width-inherit elementor-align-center elementor-widget elementor-widget-button\" data-id=\"477c5792\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/can-act.org\/fr\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-long-arrow-alt-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Consultez le site Web de CAN-ACT<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-6f3e9a64\" data-id=\"6f3e9a64\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5c4b084d elementor-widget elementor-widget-image\" data-id=\"5c4b084d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"523\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/CAN-ACT-Registry_Logo_FR_Clear-Background_Compressed-1024x523.png\" class=\"attachment-large size-large wp-image-10462\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/CAN-ACT-Registry_Logo_FR_Clear-Background_Compressed-1024x523.png 1024w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/CAN-ACT-Registry_Logo_FR_Clear-Background_Compressed-300x153.png 300w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/CAN-ACT-Registry_Logo_FR_Clear-Background_Compressed-768x392.png 768w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/CAN-ACT-Registry_Logo_FR_Clear-Background_Compressed-1536x785.png 1536w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/CAN-ACT-Registry_Logo_FR_Clear-Background_Compressed.png 1900w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-16ecfb14 elementor-widget elementor-widget-image\" data-id=\"16ecfb14\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"750\" height=\"348\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/CARE_Network.png\" class=\"attachment-large size-large wp-image-10194\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/CARE_Network.png 750w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/CARE_Network-300x139.png 300w\" sizes=\"(max-width: 750px) 100vw, 750px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-5c52fee2 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5c52fee2\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-1d75fd40\" data-id=\"1d75fd40\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3d33ecf3 elementor-widget elementor-widget-image\" data-id=\"3d33ecf3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"288\" height=\"300\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/CARES.jpg\" class=\"attachment-large size-large wp-image-10191\" alt=\"Dr. Benedikt Hallgr\u00edmsson\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-e10ebcc\" data-id=\"e10ebcc\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-656d2344 elementor-widget elementor-widget-heading\" data-id=\"656d2344\" data-element_type=\"widget\" data-e-type=\"widget\" id=\"canact\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Acc\u00e8s complet \u00e0 une expertise en sant\u00e9 buccodentaire pour les maladies rares<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-13154591 elementor-widget elementor-widget-spacer\" data-id=\"13154591\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-56665dfd elementor-widget elementor-widget-spacer\" data-id=\"56665dfd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-14af0d53 elementor-widget elementor-widget-text-editor\" data-id=\"14af0d53\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La Fondation du syndrome de Loeys-Dietz Canada soutient le d\u00e9veloppement du <strong>r\u00e9seau CARE (Comprehensive Access to Rare-disease Expertise in Oral Health)<\/strong>, une initiative nationale dirig\u00e9e par le <strong>Dr Daniel Graf<\/strong>, professeur \u00e0 la Facult\u00e9 de m\u00e9decine dentaire de l\u2019Universit\u00e9 de la Colombie-Britannique et directeur du <strong>Craniofacial, Oral, Dental Disorders (CODED) Research Cluster<\/strong>.<\/p><p>Ce r\u00e9seau r\u00e9unit des sp\u00e9cialistes en m\u00e9decine dentaire, des g\u00e9n\u00e9ticiens m\u00e9dicaux, des chercheurs, des \u00e9ducateurs et des partenaires patients afin de combler les importantes lacunes dans les soins buccodentaires destin\u00e9s aux personnes vivant avec une maladie rare.<\/p><p>Gr\u00e2ce \u00e0 un atelier national et \u00e0 une collaboration continue, CARE permettra d\u2019identifier les lacunes en mati\u00e8re de formation et de pratiques cliniques, d\u2019am\u00e9liorer la reconnaissance des manifestations buccales et craniofaciales des maladies rares et de formuler des recommandations visant \u00e0 favoriser un diagnostic plus pr\u00e9coce ainsi que des soins mieux coordonn\u00e9s et centr\u00e9s sur le patient.<\/p><p>Cette initiative est particuli\u00e8rement pertinente pour des maladies comme le syndrome de Loeys-Dietz, o\u00f9 les manifestations dentaires et craniofaciales peuvent contribuer \u00e0 une reconnaissance plus rapide de la maladie et \u00e0 un acc\u00e8s plus pr\u00e9coce \u00e0 des soins sp\u00e9cialis\u00e9s.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-68de383f elementor-widget-mobile__width-inherit elementor-align-center elementor-widget elementor-widget-button\" data-id=\"68de383f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/codedcare.org\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-long-arrow-alt-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Visitez le site Web du r\u00e9seau CARE ici<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-4f259cb3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4f259cb3\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-57102b87\" data-id=\"57102b87\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-349b27ba elementor-widget elementor-widget-heading\" data-id=\"349b27ba\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Utiliser l\u2019imagerie faciale 3D et la g\u00e9n\u00e9tique pour pr\u00e9dire la gravit\u00e9 des maladies h\u00e9r\u00e9ditaires de l\u2019aorte thoracique<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6b7875f4 elementor-widget elementor-widget-spacer\" data-id=\"6b7875f4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-679690de elementor-widget elementor-widget-text-editor\" data-id=\"679690de\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La Fondation du syndrome de Loeys-Dietz Canada soutient un projet de recherche dirig\u00e9 par le <strong>Dr Benedikt Hallgr\u00edmsson<\/strong> et son \u00e9quipe de l\u2019Universit\u00e9 de Calgary visant \u00e0 d\u00e9terminer si certaines caract\u00e9ristiques craniofaciales subtiles peuvent servir de biomarqueurs de la gravit\u00e9 des aortopathies.<\/p><p>En combinant le ph\u00e9notypage facial avanc\u00e9, les analyses g\u00e9n\u00e9tiques et des mod\u00e8les animaux, l\u2019\u00e9quipe \u00e9tudiera la fa\u00e7on dont les variations de la morphologie faciale sont associ\u00e9es \u00e0 la progression de la maladie aortique et aux r\u00e9sultats cliniques chez les personnes atteintes de MHAT syndromiques et non syndromiques.<\/p><p>L\u2019\u00e9tude cherchera \u00e9galement \u00e0 identifier les facteurs g\u00e9n\u00e9tiques associ\u00e9s aux formes les plus s\u00e9v\u00e8res de la maladie, dans le but de d\u00e9velopper de nouveaux outils favorisant un diagnostic plus pr\u00e9coce, une meilleure stratification du risque et une prise en charge davantage personnalis\u00e9e.<\/p><p>Cette recherche novatrice met en \u00e9vidence le potentiel de l\u2019intelligence artificielle et de la m\u00e9decine de pr\u00e9cision pour transformer les soins offerts aux personnes vivant avec des maladies g\u00e9n\u00e9tiques rares et des maladies h\u00e9r\u00e9ditaires de l\u2019aorte thoracique.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1fe2b4ba elementor-widget-mobile__width-inherit elementor-align-center elementor-widget elementor-widget-button\" data-id=\"1fe2b4ba\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/cihr-irsc.gc.ca\/e\/54626.html\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-long-arrow-alt-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Lisez l'article des IRSC sur ce projet ici <\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-7724b0ea\" data-id=\"7724b0ea\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-13bb589d elementor-widget elementor-widget-image\" data-id=\"13bb589d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"886\" height=\"1024\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/benedikt-886x1024.png\" class=\"attachment-large size-large wp-image-10414\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/benedikt-886x1024.png 886w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/benedikt-260x300.png 260w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/benedikt-768x888.png 768w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/benedikt.png 962w\" sizes=\"(max-width: 886px) 100vw, 886px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-3b233662 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3b233662\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-6cde9c99\" data-id=\"6cde9c99\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-1e0f373f elementor-widget elementor-widget-heading\" data-id=\"1e0f373f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">D\u00e9pistage familial initi\u00e9 par les patients pour les aortopathies g\u00e9n\u00e9tiques - Dre Gabrielle Horne<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-690f0af7 elementor-widget elementor-widget-spacer\" data-id=\"690f0af7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-549821dc elementor-widget elementor-widget-text-editor\" data-id=\"549821dc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La Fondation du syndrome de Loeys-Dietz Canada soutient un projet de recherche dirig\u00e9 par la <strong>Dre Gabrielle Horne<\/strong>, de la <em>Maritime Connective Tissue Clinic<\/em>, visant \u00e0 mieux comprendre comment les personnes vivant avec une aortopathie g\u00e9n\u00e9tique peuvent encourager les membres de leur famille \u00e0 risque \u00e0 subir un d\u00e9pistage.<\/p><p>Le d\u00e9pistage familial est essentiel pour identifier les proches susceptibles de d\u00e9velopper des complications aortiques potentiellement mortelles avant l&rsquo;apparition des sympt\u00f4mes.<\/p><p>S&rsquo;appuyant sur plus de 15 ann\u00e9es d&rsquo;exp\u00e9rience avec un mod\u00e8le de d\u00e9pistage familial initi\u00e9 par les patients, l&rsquo;\u00e9quipe de la Dre Horne a constat\u00e9 que, bien qu&rsquo;environ le tiers des proches d\u00e9pist\u00e9s re\u00e7oivent un diagnostic d&rsquo;aortopathie g\u00e9n\u00e9tique, moins de la moiti\u00e9 des patients r\u00e9ussissent \u00e0 amorcer efficacement le processus de d\u00e9pistage au sein de leur famille.<\/p><p>Gr\u00e2ce \u00e0 des entrevues r\u00e9alis\u00e9es aupr\u00e8s de patients ayant obtenu des niveaux variables de succ\u00e8s dans la mobilisation de leurs proches, cette \u00e9tude qualitative permettra d&rsquo;identifier les obstacles, les facteurs facilitants et les pratiques exemplaires en mati\u00e8re de communication familiale.<\/p><p>Les r\u00e9sultats contribueront \u00e0 \u00e9laborer de meilleures strat\u00e9gies pour favoriser le d\u00e9pistage pr\u00e9coce, accro\u00eetre la participation des familles au d\u00e9pistage et, ultimement, pr\u00e9venir des dissections aortiques et des d\u00e9c\u00e8s soudains \u00e9vitables.<\/p><p><strong>\u00c9tude \u00e0 venir!<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-79d38218\" data-id=\"79d38218\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7b00cd2f elementor-widget elementor-widget-image\" data-id=\"7b00cd2f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"739\" height=\"415\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/gabrielle-horne.jpeg\" class=\"attachment-large size-large wp-image-10417\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/gabrielle-horne.jpeg 739w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/gabrielle-horne-300x168.jpeg 300w\" sizes=\"(max-width: 739px) 100vw, 739px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-47bd1a61 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"47bd1a61\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-292f7fcd\" data-id=\"292f7fcd\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-1f4c997c elementor-widget elementor-widget-image\" data-id=\"1f4c997c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"240\" height=\"300\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Dr_Richer-240x300.jpg\" class=\"attachment-medium size-medium wp-image-10200\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Dr_Richer-240x300.jpg 240w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Dr_Richer.jpg 318w\" sizes=\"(max-width: 240px) 100vw, 240px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-27ed26cb\" data-id=\"27ed26cb\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5a61f348 elementor-widget elementor-widget-heading\" data-id=\"5a61f348\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Faire progresser la recherche sur la qualit\u00e9 de vie dans le syndrome de Loeys-Dietz -Dre Julie Richer<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-60ef5602 elementor-widget elementor-widget-spacer\" data-id=\"60ef5602\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4c0ee2d9 elementor-widget elementor-widget-text-editor\" data-id=\"4c0ee2d9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Reconnaissant l&rsquo;importance de mieux comprendre le quotidien des personnes vivant avec le syndrome de Loeys-Dietz (SLD), la Fondation canadienne du syndrome de Loeys-Dietz a entrepris la coordination d&rsquo;un nouveau projet de recherche sur la qualit\u00e9 de vie en collaboration avec la Dre Julie Richer, g\u00e9n\u00e9ticienne m\u00e9dicale au Centre hospitalier pour enfants de l&rsquo;est de l&rsquo;Ontario (CHEO).<\/p><p>Cette initiative repr\u00e9sente une \u00e9tape importante pour combler une lacune majeure dans les connaissances actuelles sur les r\u00e9percussions du SLD au-del\u00e0 des r\u00e9sultats cliniques.<\/p><p>Le projet explorera diff\u00e9rentes dimensions de la qualit\u00e9 de vie \u00e0 l&rsquo;aide de mesures rapport\u00e9es par les patients, notamment :<\/p><ul><li>la sant\u00e9 physique;<\/li><li>le bien-\u00eatre \u00e9motionnel;<\/li><li>la participation sociale;<\/li><li>l&rsquo;exp\u00e9rience des soins de sant\u00e9;<\/li><li>les r\u00e9percussions globales de la vie avec une maladie g\u00e9n\u00e9tique rare.<\/li><\/ul><p>En recueillant directement les t\u00e9moignages des patients et de leurs familles, l&rsquo;\u00e9tude vise \u00e0 mieux comprendre les r\u00e9alit\u00e9s v\u00e9cues \u00e0 chaque \u00e9tape de la vie et \u00e0 identifier les domaines o\u00f9 un soutien, des ressources ou des interventions suppl\u00e9mentaires sont n\u00e9cessaires.<\/p><p>En tant qu&rsquo;organisation dirig\u00e9e par les besoins des patients, la Fondation joue un r\u00f4le central dans la conception de cette \u00e9tude afin que la recherche refl\u00e8te les priorit\u00e9s et les pr\u00e9occupations de la communaut\u00e9 SLD.<\/p><p>Les r\u00e9sultats fourniront des donn\u00e9es pr\u00e9cieuses pour orienter les soins cliniques, les programmes de soutien, les activit\u00e9s de d\u00e9fense des int\u00e9r\u00eats des patients ainsi que les futures priorit\u00e9s de recherche.<\/p><p>Actuellement en phase de d\u00e9veloppement, l&rsquo;\u00e9tude devrait \u00eatre lanc\u00e9e en 2026. Elle repr\u00e9sentera l&rsquo;une des premi\u00e8res initiatives canadiennes consacr\u00e9es \u00e0 l&rsquo;\u00e9valuation syst\u00e9matique de la qualit\u00e9 de vie des personnes vivant avec le syndrome de Loeys-Dietz et contribuera \u00e0 une meilleure compr\u00e9hension de leur exp\u00e9rience afin d&rsquo;am\u00e9liorer les soins et les r\u00e9sultats de sant\u00e9.<\/p><p><strong>\u00c9tude \u00e0 venir!<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-39e9b5db elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"39e9b5db\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-1ccfac1\" data-id=\"1ccfac1\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-440d9f3b elementor-widget elementor-widget-heading\" data-id=\"440d9f3b\" data-element_type=\"widget\" data-e-type=\"widget\" id=\"leap\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Perspectives des patients sur le parcours diagnostique du syndrome de Loeys-Dietz<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6336d789 elementor-widget elementor-widget-text-editor\" data-id=\"6336d789\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La Fondation canadienne du syndrome de Loeys-Dietz continue de promouvoir une recherche centr\u00e9e sur les patients afin d&rsquo;approfondir la compr\u00e9hension des exp\u00e9riences v\u00e9cues par les personnes et les familles touch\u00e9es par le syndrome de Loeys-Dietz (SLD).<\/p><p>En 2025, nous avons soutenu une \u00e9tude portant sur le parcours diagnostique des personnes atteintes du SLD, dirig\u00e9e par <strong>Sally Al-Mufty<\/strong> dans le cadre de son projet de ma\u00eetrise \u00e8s sciences et cosign\u00e9e par l&rsquo;agente de recherche et de soutien aux patients de la Fondation.<\/p><p>L&rsquo;\u00e9tude, intitul\u00e9e <strong>\u00ab Des exp\u00e9riences v\u00e9cues au changement syst\u00e9mique : perspectives des patients sur le parcours diagnostique du syndrome de Loeys-Dietz \u00bb<\/strong>, a \u00e9t\u00e9 publi\u00e9e dans <strong>CJC Open<\/strong>, une revue internationale avec comit\u00e9 de lecture et en libre acc\u00e8s consacr\u00e9e \u00e0 l&rsquo;avancement des connaissances en cardiologie et en sciences cardiovasculaires.<\/p><p>\u00c0 partir d&rsquo;entrevues et de t\u00e9moignages de patients, cette recherche met en lumi\u00e8re les difficult\u00e9s rencontr\u00e9es pour obtenir un diagnostic exact et rapide, notamment :<\/p><ul><li>les retards diagnostiques;<\/li><li>les obstacles \u00e0 l&rsquo;acc\u00e8s aux sp\u00e9cialistes;<\/li><li>les r\u00e9percussions \u00e9motionnelles li\u00e9es au parcours dans le syst\u00e8me de sant\u00e9 lorsqu&rsquo;on vit avec une maladie rare.<\/li><\/ul><p>L&rsquo;importance de ces travaux a \u00e9galement \u00e9t\u00e9 reconnue par l&rsquo;obtention du <strong>Prix de la meilleure affiche scientifique des stagiaires de l&rsquo;Association canadienne des conseillers en g\u00e9n\u00e9tique (CAGC)<\/strong> lors du congr\u00e8s conjoint 2025 de la <strong>CAGC<\/strong> et du <strong>Coll\u00e8ge canadien des g\u00e9n\u00e9ticiens m\u00e9dicaux (CCMG)<\/strong>.<\/p><p>En mettant de l&rsquo;avant la voix des patients, cette recherche apporte des donn\u00e9es probantes qui pourront contribuer \u00e0 am\u00e9liorer les pratiques cliniques, optimiser les parcours diagnostiques et orienter les futures initiatives nationales visant \u00e0 am\u00e9liorer les soins destin\u00e9s aux personnes vivant avec le syndrome de Loeys-Dietz.<\/p><p>Elle refl\u00e8te l&rsquo;engagement de la Fondation \u00e0 faire des exp\u00e9riences des patients un \u00e9l\u00e9ment central de la recherche, de la d\u00e9fense des int\u00e9r\u00eats des patients et de l&rsquo;am\u00e9lioration du syst\u00e8me de sant\u00e9.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-7379e7ef\" data-id=\"7379e7ef\" data-element_type=\"column\" 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data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"436\" height=\"436\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Sally_Al-Mufty.jpg\" class=\"attachment-large size-large wp-image-10204\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Sally_Al-Mufty.jpg 436w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Sally_Al-Mufty-300x300.jpg 300w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/06\/Sally_Al-Mufty-150x150.jpg 150w\" sizes=\"(max-width: 436px) 100vw, 436px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<div class=\"elementor-element elementor-element-e7b700c elementor-widget elementor-widget-image\" data-id=\"e7b700c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"524\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/patient-voices-768x524.jpg\" class=\"attachment-medium_large size-medium_large wp-image-10419\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/patient-voices-768x524.jpg 768w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/patient-voices-300x205.jpg 300w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/patient-voices-1024x699.jpg 1024w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/patient-voices-1536x1048.jpg 1536w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/patient-voices.jpg 1712w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-719014aa elementor-widget-mobile__width-inherit elementor-align-center elementor-widget elementor-widget-button\" data-id=\"719014aa\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/www.sciencedirect.com\/science\/article\/pii\/S2589790X26001022\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-long-arrow-alt-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Lien vers l'article <\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-4037ba65 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4037ba65\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t\t<div class=\"elementor-background-overlay\"><\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-6f19c367\" data-id=\"6f19c367\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-56a8cca5 elementor-widget elementor-widget-image\" data-id=\"56a8cca5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/12\/EN_FINAL-GRIP-Inforgraphic.pdf\">\n\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"721\" height=\"1024\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/GRIP-FR-721x1024.png\" class=\"attachment-large size-large wp-image-10464\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/GRIP-FR-721x1024.png 721w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/GRIP-FR-211x300.png 211w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/GRIP-FR-768x1090.png 768w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/GRIP-FR.png 1048w\" sizes=\"(max-width: 721px) 100vw, 721px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-594d7a1e\" data-id=\"594d7a1e\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-c5c765f elementor-widget elementor-widget-heading\" data-id=\"c5c765f\" data-element_type=\"widget\" data-e-type=\"widget\" id=\"grip\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Plateforme mondiale de recherche et de connaissances (GRIP)<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7bd556fe elementor-widget elementor-widget-text-editor\" data-id=\"7bd556fe\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La <strong>Plateforme mondiale de recherche et de connaissances (GRIP)<\/strong> est un d\u00e9p\u00f4t \u00e9volutif et novateur de la litt\u00e9rature scientifique consacr\u00e9e au syndrome de Loeys-Dietz (SLD). D\u00e9velopp\u00e9e et maintenue par la Fondation du syndrome de Loeys-Dietz Canada, GRIP est la seule base de donn\u00e9es centralis\u00e9e au monde enti\u00e8rement d\u00e9di\u00e9e \u00e0 la collecte, \u00e0 l&rsquo;organisation et \u00e0 l&rsquo;analyse des publications scientifiques portant sur le SLD, notamment en g\u00e9n\u00e9tique, manifestations cliniques, diagnostic, r\u00e9sultats chirurgicaux et th\u00e9rapies \u00e9mergentes.<\/p><p>La plateforme soutient les cliniciens, les chercheurs, les patients et les organismes de d\u00e9fense des int\u00e9r\u00eats en facilitant l&rsquo;acc\u00e8s aux donn\u00e9es probantes et en favorisant le transfert des connaissances au sein de la communaut\u00e9 internationale du syndrome de Loeys-Dietz.<\/p><p>Au <strong>31 d\u00e9cembre 2025<\/strong>, GRIP comptait <strong>1 762 publications<\/strong>, ce qui en fait la collection la plus compl\u00e8te et la plus \u00e0 jour des connaissances scientifiques sur le syndrome de Loeys-Dietz. Parmi celles-ci, <strong>1 275 articles<\/strong> portaient directement sur le SLD et ont servi de base \u00e0 une revue syst\u00e9matique retra\u00e7ant les vingt premi\u00e8res ann\u00e9es de recherche sur cette maladie.<\/p><p>Cette analyse a d\u00e9montr\u00e9 l&rsquo;\u00e9volution des connaissances, passant :<\/p><ul><li>de la d\u00e9couverte des g\u00e8nes responsables et de la clarification diagnostique (2005\u20132010);<\/li><li>\u00e0 l&rsquo;am\u00e9lioration de l&rsquo;imagerie diagnostique et \u00e0 l&rsquo;\u00e9largissement du spectre ph\u00e9notypique (2010\u20132015);<\/li><li>\u00e0 l&rsquo;optimisation des interventions chirurgicales et \u00e0 l&rsquo;am\u00e9lioration de la survie (2015\u20132020);<\/li><li>puis, plus r\u00e9cemment, au d\u00e9veloppement du d\u00e9pistage g\u00e9n\u00e9tique et des approches th\u00e9rapeutiques translationnelles (2020\u20132025).<\/li><\/ul><p>Bien que ces avanc\u00e9es aient permis de transformer le syndrome de Loeys-Dietz, autrefois nouvellement d\u00e9crit, en une maladie chronique beaucoup mieux prise en charge, des lacunes importantes subsistent, notamment en ce qui concerne les r\u00e9sultats rapport\u00e9s par les patients, la qualit\u00e9 de vie et les r\u00e9percussions psychosociales.<\/p><p>En regroupant les connaissances scientifiques mondiales dans une plateforme unique et facilement consultable, GRIP permet :<\/p><ul><li>aux cliniciens de demeurer \u00e0 jour quant aux meilleures pratiques;<\/li><li>aux chercheurs d&rsquo;identifier les lacunes de connaissances et de d\u00e9velopper de nouveaux projets;<\/li><li>de renforcer les activit\u00e9s de d\u00e9fense des int\u00e9r\u00eats fond\u00e9es sur des donn\u00e9es probantes;<\/li><li>d&rsquo;am\u00e9liorer l&rsquo;acc\u00e8s \u00e0 l&rsquo;information scientifique pour les personnes atteintes et leurs familles.<\/li><\/ul><p>En <strong>2026<\/strong>, la Fondation poursuivra l&rsquo;expansion de GRIP en y int\u00e9grant les nouvelles publications portant non seulement sur le syndrome de Loeys-Dietz, mais \u00e9galement sur le syndrome de Marfan, le syndrome d&rsquo;Ehlers-Danlos vasculaire (SEDv) et les autres maladies h\u00e9r\u00e9ditaires de l&rsquo;aorte thoracique (MHAT).<\/p><p>L&rsquo;\u00e9quipe pr\u00e9voit \u00e9galement diffuser les r\u00e9sultats de la revue des vingt ann\u00e9es de recherche sur le syndrome de Loeys-Dietz dans le cadre de congr\u00e8s scientifiques et de publications \u00e9valu\u00e9es par les pairs, contribuant ainsi \u00e0 l&rsquo;avancement des connaissances sur les maladies rares du tissu conjonctif et de l&rsquo;aorte.<\/p><p>Si vous \u00eates un chercheur ou un clinicien \u00e0 la recherche d\u2019\u00e9tudes publi\u00e9es sur le syndrome de Loeys-Dietz, veuillez nous contacter: <a href=\"mailto:info@loeysdietzcanada.org\" target=\"_blank\" rel=\"noopener\">info@loeysdietzcanada.org<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-39ef932 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"39ef932\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-49b59276\" data-id=\"49b59276\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-777e8bec elementor-widget elementor-widget-heading\" data-id=\"777e8bec\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Comprendre le parcours de vie avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif: Un programme de recherche ax\u00e9 sur les patients<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-53818c0c elementor-widget elementor-widget-spacer\" data-id=\"53818c0c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-64cf9db6 elementor-widget elementor-widget-text-editor\" data-id=\"64cf9db6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Vivre avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif (THTC), comme le syndrome de Loeys-Dietz, le syndrome de Marfan ou le syndrome d&rsquo;Ehlers-Danlos, signifie souvent devoir naviguer dans un syst\u00e8me de sant\u00e9 complexe tout en g\u00e9rant une maladie qui touche de nombreux aspects de la vie quotidienne. Malgr\u00e9 la nature chronique et multisyst\u00e9mique de ces maladies, on conna\u00eet encore peu la mani\u00e8re dont les personnes les vivent au fil du temps et o\u00f9 persistent les principales lacunes dans les soins.<\/p><p>Dirig\u00e9 par <strong>Catherine C\u00f4t\u00e9, M. Sc., candidate au doctorat en psychologie clinique \u00e0 l&rsquo;Universit\u00e9 de Montr\u00e9al et au Centre de recherche du CHUM<\/strong>, sous la supervision de <strong>Dre Gabrielle Pag\u00e9, Ph. D.<\/strong>, ce programme de recherche ax\u00e9 sur les patients vise \u00e0 mieux comprendre l&rsquo;exp\u00e9rience v\u00e9cue des personnes atteintes d&rsquo;un THTC et \u00e0 produire des connaissances permettant d&rsquo;am\u00e9liorer les soins, de soutenir les personnes atteintes et leurs proches, ainsi que d&rsquo;\u00e9clairer les professionnels de la sant\u00e9 et les d\u00e9cideurs. Le projet est r\u00e9alis\u00e9 en partenariat avec des patients partenaires, des cliniciens, des chercheurs et des organismes communautaires, dont la <strong>Fondation canadienne du syndrome de Loeys-Dietz<\/strong>.<\/p><p>Le programme s&rsquo;articule autour de trois objectifs : r\u00e9aliser une revue syst\u00e9matique des lignes directrices internationales de pratique clinique, mieux comprendre le parcours de vie des personnes vivant avec un THTC gr\u00e2ce \u00e0 des entrevues et \u00e0 la cartographie de leur parcours, puis identifier des occasions d&rsquo;am\u00e9liorer les soins et les services tout au long de la vie.<\/p><p>Les r\u00e9sultats donneront lieu \u00e0 des ressources concr\u00e8tes, notamment une base de donn\u00e9es des recommandations cliniques, des r\u00e9sum\u00e9s vulgaris\u00e9s, des cartes visuelles du parcours de vie, des recommandations pour am\u00e9liorer les soins ainsi qu&rsquo;un <strong>Parcours d&rsquo;apprentissage patient<\/strong> bilingue visant \u00e0 faciliter la compr\u00e9hension de la maladie, la navigation dans le syst\u00e8me de sant\u00e9 et l&rsquo;autogestion.<\/p><p>Les adultes vivant au Canada ayant re\u00e7u un diagnostic de syndrome de Loeys-Dietz, de syndrome de Marfan ou de syndrome d&rsquo;Ehlers-Danlos sont invit\u00e9s \u00e0 participer \u00e0 cette \u00e9tude et \u00e0 contribuer \u00e0 fa\u00e7onner les soins de demain.<\/p><p><strong>Contact<\/strong><\/p><p>Pour toute question concernant le projet ou les possibilit\u00e9s de participation, veuillez communiquer avec :<br \/><strong>Catherine C\u00f4t\u00e9<\/strong><br \/>\ud83d\udce7 <a href=\"mailto:catherine.cote.13@umontreal.ca\">catherine.cote.13@umontreal.ca<\/a><br \/><em>Inscrivez-vous \u00e0 notre infolettre pour recevoir des mises \u00e0 jour sur le projet CONNECT-THTC : <\/em><a 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