{"id":16220,"date":"2017-12-13T14:54:37","date_gmt":"2017-12-13T14:54:37","guid":{"rendered":"https:\/\/sffd.ch\/les-centres-de-competence\/ensemble-pour-fabry\/"},"modified":"2022-10-09T09:19:16","modified_gmt":"2022-10-09T09:19:16","slug":"ensemble-pour-fabry","status":"publish","type":"page","link":"https:\/\/sffd.ch\/fr\/les-centres-de-competence\/ensemble-pour-fabry\/","title":{"rendered":"Ensemble pour Fabry"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text]<\/p>\n<h1>Ensemble pour Fabry<\/h1>\n<p>[\/vc_column_text][vc_separator type=\u00a0\u00bbtransparent\u00a0\u00bb][\/vc_column][\/vc_row][vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text]Le calvaire d\u2019un patient atteint de la maladie de Fabry est tr\u00e8s long. Les sympt\u00f4mes diffus sont difficiles \u00e0 interpr\u00e9ter et, en moyenne, il faut 10 ans pour poser le diagnostic.<\/p>\n<p>Les patients atteints de la maladie de Fabry sont suivis depuis des ann\u00e9es \u00e0 Zurich et \u00e0 Lausanne. Ces centres \u2013 qui collaborent depuis de nombreuses ann\u00e9es &#8211; ont ainsi acquis une vaste exp\u00e9rience de la prise en charge des patients ainsi que du traitement de substitution enzymatique.<\/p>\n<p>&nbsp;<\/p>\n<p>Les professionnels m\u00e9dicaux ayant des questions sur la maladie de Fabry s\u2019adresseront,<\/p>\n<ul>\n<li>en Suisse orientale, \u00e0 l&rsquo;USZ <a href=\"https:\/\/sffd.ch\/fr\/expert-fabry-suisse-du-nord\/\">PD Dr m\u00e9d Albina Nowak-Wilhelm<\/a>,<\/li>\n<li>en Suisse al\u00e9manique, \u00e0 <a href=\"https:\/\/sffd.ch\/fr\/expert-fabry-suisse-orientale\/\">Prof. Dr m\u00e9d Pierre-Alexandre Krayenb\u00fchl<\/a>,<\/li>\n<li>en Suisse romande et au Tessin, au <a href=\"https:\/\/sffd.ch\/fr\/expert-fabry-romandie\/\">PD Dr m\u00e9d Fr\u00e9d\u00e9ric Barbey<\/a>, du CHUV,<\/li>\n<li>en Suisse centrale, \u00e0 l&rsquo;h\u00f4pital Insel, <a href=\"https:\/\/sffd.ch\/fr\/expert-fabry-suisse-centrale\/\"> Prof. Dr. med. Uyen Huynh-Do, MME<\/a>.<\/li>\n<\/ul>\n<p>[\/vc_column_text][vc_separator type=\u00a0\u00bbtransparent\u00a0\u00bb][\/vc_column][\/vc_row][vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_widget_sidebar sidebar_id=\u00a0\u00bbsidebar\u00a0\u00bb][\/vc_column][\/vc_row][vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_separator type=\u00a0\u00bbtransparent\u00a0\u00bb][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text] Ensemble pour Fabry [\/vc_column_text][vc_separator type=\u00a0\u00bbtransparent\u00a0\u00bb][\/vc_column][\/vc_row][vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text]Le calvaire d\u2019un patient atteint de la maladie de Fabry est tr\u00e8s long. Les sympt\u00f4mes diffus sont difficiles \u00e0 interpr\u00e9ter et, en moyenne, il faut 10&#8230;<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":16212,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-16220","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Ensemble pour Fabry - SFFD<\/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:\/\/sffd.ch\/fr\/les-centres-de-competence\/ensemble-pour-fabry\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ensemble pour Fabry - SFFD\" \/>\n<meta property=\"og:description\" content=\"[vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text] Ensemble pour Fabry [\/vc_column_text][vc_separator type=\u00a0\u00bbtransparent\u00a0\u00bb][\/vc_column][\/vc_row][vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text]Le calvaire d\u2019un patient atteint de la maladie de Fabry est tr\u00e8s long. Les sympt\u00f4mes diffus sont difficiles \u00e0 interpr\u00e9ter et, en moyenne, il faut 10...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sffd.ch\/fr\/les-centres-de-competence\/ensemble-pour-fabry\/\" \/>\n<meta property=\"og:site_name\" content=\"SFFD\" \/>\n<meta property=\"article:modified_time\" content=\"2022-10-09T09:19:16+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sffd.ch\\\/fr\\\/les-centres-de-competence\\\/ensemble-pour-fabry\\\/\",\"url\":\"https:\\\/\\\/sffd.ch\\\/fr\\\/les-centres-de-competence\\\/ensemble-pour-fabry\\\/\",\"name\":\"Ensemble pour Fabry - SFFD\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sffd.ch\\\/#website\"},\"datePublished\":\"2017-12-13T14:54:37+00:00\",\"dateModified\":\"2022-10-09T09:19:16+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sffd.ch\\\/fr\\\/les-centres-de-competence\\\/ensemble-pour-fabry\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sffd.ch\\\/fr\\\/les-centres-de-competence\\\/ensemble-pour-fabry\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sffd.ch\\\/fr\\\/les-centres-de-competence\\\/ensemble-pour-fabry\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Startseite\",\"item\":\"https:\\\/\\\/sffd.ch\\\/fr\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Les centres de comp\u00e9tence\",\"item\":\"https:\\\/\\\/sffd.ch\\\/fr\\\/les-centres-de-competence\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Ensemble pour Fabry\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/sffd.ch\\\/#website\",\"url\":\"https:\\\/\\\/sffd.ch\\\/\",\"name\":\"SFFD\",\"description\":\"Swiss Foundation of Fabry Disease\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/sffd.ch\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Ensemble pour Fabry - SFFD","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/sffd.ch\/fr\/les-centres-de-competence\/ensemble-pour-fabry\/","og_locale":"fr_FR","og_type":"article","og_title":"Ensemble pour Fabry - SFFD","og_description":"[vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text] Ensemble pour Fabry [\/vc_column_text][vc_separator type=\u00a0\u00bbtransparent\u00a0\u00bb][\/vc_column][\/vc_row][vc_row css_animation=\u00a0\u00bb\u00a0\u00bb row_type=\u00a0\u00bbrow\u00a0\u00bb use_row_as_full_screen_section=\u00a0\u00bbno\u00a0\u00bb type=\u00a0\u00bbfull_width\u00a0\u00bb angled_section=\u00a0\u00bbno\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb background_image_as_pattern=\u00a0\u00bbwithout_pattern\u00a0\u00bb][vc_column][vc_column_text]Le calvaire d\u2019un patient atteint de la maladie de Fabry est tr\u00e8s long. 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