{"id":1803,"date":"2022-09-01T16:02:01","date_gmt":"2022-09-01T20:02:01","guid":{"rendered":"https:\/\/loeysdietzcanada.org\/?page_id=1803"},"modified":"2022-11-28T21:58:18","modified_gmt":"2022-11-29T02:58:18","slug":"etablir-les-liens","status":"publish","type":"page","link":"https:\/\/loeysdietzcanada.org\/fr\/notre-fondation\/etablir-les-liens\/","title":{"rendered":"\u00c9tablir les liens"},"content":{"rendered":"\t\t
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\u00c9tablir les liens<\/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
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Le slogan de la Fondation, <\/span>\u00c9tablir les liens<\/b>, est un hommage \u00e0 la communaut\u00e9 du syndrome de Loeys-Dietz (SLD) et \u00e0 l’importance de relier les personnes, les sympt\u00f4mes, les ressources et les solutions.<\/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

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\n\t\t\t\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\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
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Relier les sympt\u00f4mes<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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En tant que trouble du tissu conjonctif, <\/span>le syndrome de Loeys-Dietz <\/b>\u00e9tablit les liens<\/i><\/b> entre une vari\u00e9t\u00e9 de sympt\u00f4mes qui peuvent appara\u00eetre dans le corps entier, dont la gravit\u00e9 varie, qui affectent les individus diff\u00e9remment et qui semblent initialement ne pas \u00eatre li\u00e9s. <\/span><\/p>

Le syndrome \u00e9tablit \u00e9galement des liens entre six g\u00e8nes diff\u00e9rents, soit le TGFBR1, le TGFBR2, le SMAD3, le TGFB2, le SMAD2 et le TGFB3, dont les mutations peuvent provoquer le SLD.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\tconna\u00eetre les sympt\u00f4mes du SLD<\/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
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Relier les personnes<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Plus important encore, la <\/span>communaut\u00e9 SLD <\/b>\u00e9tablit des liens<\/i><\/b> entre des personnes<\/b> ayant des exp\u00e9riences, des origines et des situations g\u00e9ographiques diff\u00e9rentes. <\/span><\/p>

La communaut\u00e9 est un lieu inestimable de soutien et de renseignements. Les personnes atteintes de SLD et leurs familles, leurs amis, leurs soignants, les professionnels de la sant\u00e9 et les chercheurs peuvent se r\u00e9unir et tous s’en portent mieux.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\tRencontrer des personnes atteintes du SLD<\/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
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Relier les soins<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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La <\/span>communaut\u00e9 SLD <\/b>\u00e9tablit les liens<\/i><\/b> pour aider les gens<\/b> \u00e0 vivre plus longtemps et \u00e0 avoir une meilleure qualit\u00e9 de vie. <\/span><\/p>

Pour poser un diagnostic, les professionnels de la sant\u00e9 et les familles \u00e9tablissent des liens entre les sympt\u00f4mes d’une personne, ses ant\u00e9c\u00e9dents m\u00e9dicaux familiaux et les diagnostics potentiels. <\/span><\/p>

Apr\u00e8s le diagnostic, les \u00e9quipes m\u00e9dicales et les familles \u00e9tablissent \u00e0 nouveau des liens entre les besoins et les sympt\u00f4mes d’une personne, ses options de traitement et de prise en charge, et les ressources et solutions disponibles.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\ttrouver une clinique<\/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
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Relier les ressources<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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En tant que fondation, nous <\/b>\u00e9tablissons les liens<\/i><\/b> au sein de la communaut\u00e9 SLD et au-del\u00e0. <\/span><\/p>

La Fondation entretient des liens et collabore activement avec d’autres personnes et organismes de la communaut\u00e9 SLD et au-del\u00e0 – dans les communaut\u00e9s connexes de troubles du tissu conjonctif, de troubles aortiques h\u00e9r\u00e9ditaires, de maladies rares et de maladies chroniques. Ensemble, nous nous en sortons mieux.\u00a0\u00a0<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\tEn apprendre davantage sur la Fondation<\/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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

\u00c9tablir les liens Le slogan de la Fondation, \u00c9tablir les liens, est un hommage \u00e0 la communaut\u00e9 du syndrome de Loeys-Dietz (SLD) et \u00e0 l’importance de relier les personnes, les […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":1797,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-1803","page","type-page","status-publish","hentry"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/pages\/1803","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/comments?post=1803"}],"version-history":[{"count":16,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/pages\/1803\/revisions"}],"predecessor-version":[{"id":3670,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/pages\/1803\/revisions\/3670"}],"up":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/pages\/1797"}],"wp:attachment":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/media?parent=1803"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}