{"id":439,"date":"2023-02-20T16:00:34","date_gmt":"2023-02-20T15:00:34","guid":{"rendered":"https:\/\/www.chu-tours.fr\/pemr-cvl\/?page_id=439"},"modified":"2024-11-18T11:01:17","modified_gmt":"2024-11-18T10:01:17","slug":"maladies-rares-de-la-peau-et-des-muqueuses-dorigine-genetique-magec","status":"publish","type":"page","link":"https:\/\/www.chu-tours.fr\/pemr-cvl\/maladies-rares-de-la-peau-et-des-muqueuses-dorigine-genetique-magec\/","title":{"rendered":"Maladies rares de la peau et des muqueuses d\u2019origine g\u00e9n\u00e9tique \u2013 MAGEC"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"439\" class=\"elementor elementor-439\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-4893219 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4893219\" data-element_type=\"section\">\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-5ac965db\" data-id=\"5ac965db\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-248a8311 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"248a8311\" data-element_type=\"section\">\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-inner-column elementor-element elementor-element-61ea10bf\" data-id=\"61ea10bf\" data-element_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-66c68510 elementor-widget elementor-widget-image\" data-id=\"66c68510\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"131\" height=\"101\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/logo-crmr.png\" class=\"attachment-large size-large wp-image-361\" alt=\"\" \/>\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-inner-column elementor-element elementor-element-19134bf8\" data-id=\"19134bf8\" data-element_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-7311e3f2 elementor-widget elementor-widget-image\" data-id=\"7311e3f2\" data-element_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<img fetchpriority=\"high\" decoding=\"async\" width=\"708\" height=\"396\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/photo-home.png\" class=\"attachment-large size-large wp-image-442\" alt=\"\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/photo-home.png 708w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/photo-home-300x168.png 300w\" sizes=\"(max-width: 708px) 100vw, 708px\" \/>\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-68c9ea06 elementor-widget elementor-widget-heading\" data-id=\"68c9ea06\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}<\/style><h2 class=\"elementor-heading-title elementor-size-default\">Centre de R\u00e9f\u00e9rence des maladies rares de la peau et des muqueuses d\u2019origine g\u00e9n\u00e9tique - MAGEC<br \/><br \/>Site constitutif de Tours<\/h2>\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 class=\"elementor-section elementor-top-section elementor-element elementor-element-41d334db elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"41d334db\" data-element_type=\"section\">\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-6ec7cefe\" data-id=\"6ec7cefe\" data-element_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-52fbb854 elementor-widget elementor-widget-text-editor\" data-id=\"52fbb854\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p><strong>Le centre de R\u00e9f\u00e9rence MAGEC de Tours<\/strong>, coordonn\u00e9 par le <strong>Pr Annabel Maruani<\/strong>, est un centre d\u2019expertise pour les anomalies vasculaires et lymphatiques rares, \u00e0 d\u00e9but p\u00e9diatrique.<\/p><p>Il a pour triple mission :<\/p><ol><li>la prise en charge diagnostique et th\u00e9rapeutique de ces pathologies ;<\/li><li>le d\u00e9veloppement de la recherche clinique dans ces domaines ;<\/li><li>l\u2019enseignement et la formation.<\/li><\/ol><p>L\u2019activit\u00e9 clinique se r\u00e9partit sur trois sites du Centre Hospitalier R\u00e9gional Universitaire de Tours (h\u00f4pitaux Trousseau, Bretonneau et Gatien de Clocheville), et est port\u00e9e par une \u00e9quipe pluridisciplinaire exp\u00e9riment\u00e9e. Le centre de r\u00e9f\u00e9rence MAGEC-Tours est affili\u00e9 \u00e0 la fili\u00e8re de sant\u00e9 maladies rares FIMARAD.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-2217fec5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2217fec5\" data-element_type=\"section\">\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-inner-column elementor-element elementor-element-6f55d937\" data-id=\"6f55d937\" data-element_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-289eb2a4 elementor-widget elementor-widget-image\" data-id=\"289eb2a4\" data-element_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<img decoding=\"async\" width=\"40\" height=\"40\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/uk-flag-square-icon-128-40x40-1-40x40.png\" class=\"attachment-pictogramme-home size-pictogramme-home wp-image-372\" alt=\"\" \/>\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-inner-column elementor-element elementor-element-5b7b7e1\" data-id=\"5b7b7e1\" data-element_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-71920900 elementor-widget elementor-widget-toggle\" data-id=\"71920900\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-toggle{text-align:start}.elementor-toggle .elementor-tab-title{font-weight:700;line-height:1;margin:0;padding:15px;border-bottom:1px solid #d5d8dc;cursor:pointer;outline:none}.elementor-toggle .elementor-tab-title .elementor-toggle-icon{display:inline-block;width:1em}.elementor-toggle .elementor-tab-title .elementor-toggle-icon svg{margin-inline-start:-5px;width:1em;height:1em}.elementor-toggle .elementor-tab-title .elementor-toggle-icon.elementor-toggle-icon-right{float:right;text-align:right}.elementor-toggle .elementor-tab-title .elementor-toggle-icon.elementor-toggle-icon-left{float:left;text-align:left}.elementor-toggle .elementor-tab-title .elementor-toggle-icon .elementor-toggle-icon-closed{display:block}.elementor-toggle .elementor-tab-title .elementor-toggle-icon .elementor-toggle-icon-opened{display:none}.elementor-toggle .elementor-tab-title.elementor-active{border-bottom:none}.elementor-toggle .elementor-tab-title.elementor-active .elementor-toggle-icon-closed{display:none}.elementor-toggle .elementor-tab-title.elementor-active .elementor-toggle-icon-opened{display:block}.elementor-toggle .elementor-tab-content{padding:15px;border-bottom:1px solid #d5d8dc;display:none}@media (max-width:767px){.elementor-toggle .elementor-tab-title{padding:12px}.elementor-toggle .elementor-tab-content{padding:12px 10px}}.e-con-inner>.elementor-widget-toggle,.e-con>.elementor-widget-toggle{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1901\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1901\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><em>The MAGEC Center of Tours...<\/em><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1901\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1901\"><p><em><strong>The MAGEC Center of Tours<\/strong>, coordinated by <strong>Pr Annabel Maruani<\/strong>, is a center of expertise for rare vascular and lymphatic anomalies with pediatric onset.<\/em><\/p><p><em> The goals of the center are as follows: <\/em><\/p><ol><li><em>diagnostic and therapeutic management of these diseases; <\/em><\/li><li><em>improving clinical research in this field; <\/em><\/li><li><em>education. <\/em><\/li><\/ol><p><em>Clinical activities are spread over three sites of the University Hospital Center of Tours (hospitals Trousseau, Bretonneau and Gatien de Clocheville) and are provided by an advanced pluridisciplinary team. The center is affiliated with the FIMARAD rare diseases health sector.<\/em><\/p><\/div>\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<\/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\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-23bddec9 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"23bddec9\" data-element_type=\"section\">\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-5fd912a8\" data-id=\"5fd912a8\" data-element_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-46d040ff elementor-widget elementor-widget-image\" data-id=\"46d040ff\" data-element_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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"143\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/pathologies-magec-300x143-1.png\" class=\"attachment-medium size-medium wp-image-443\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">PATHOLOGIES CONCERN\u00c9ES<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-1adb4355 elementor-widget elementor-widget-toggle\" data-id=\"1adb4355\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-4501\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-4501\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Pathologies concern\u00e9es<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-4501\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-4501\"><ul><li>Angiomes (tous diagnostics)<\/li><li>Malformations veineuses<\/li><li>Malformations art\u00e9rio-veineuses<\/li><li>Malformations lymphatiques kystiques (lymphangiomes) de la peau ou de la cavit\u00e9 buccale<\/li><li>Lymph\u0153d\u00e8mes de l\u2019enfant<\/li><li>Anomalies lymphatiques autres<\/li><li>Malformations capillaires (angiomes plans)<\/li><li>Cutis marmorata telangiectatica congenita<\/li><li>Malformations vasculaires complexes<\/li><li>Malformations vasculaires li\u00e9es \u00e0 un mosa\u00efcisme<\/li><li>PROS (PIK3CA)<\/li><li>Syndrome CLOVES<\/li><li>Syndrome de Prot\u00e9e<\/li><li>Syndrome de Klippel-Trenaunay<\/li><li>Syndrome de Parkes-Weber<\/li><li>Syndrome PHACE<\/li><li>Syndrome SACRAL\/PELVIS\/LUMBAR<\/li><li>Syndrome MCAP<\/li><li>Syndrome MC-MAV (RASA1, EPHB4)<\/li><li>Syndrome de Sturge-Weber<\/li><li>Angiomes familiaux<\/li><li>Maladies vasculaires rares \u00e0 d\u00e9but pr\u00e9coce sans diagnostic<\/li><li>\u0152d\u00e8mes de membres \u00e0 d\u00e9but pr\u00e9coce sans diagnostic<\/li><li>H\u00e9mangiomes (RICH, NICH, PICH, autres)<\/li><li>Tumeurs vasculaires compliqu\u00e9es de ph\u00e9nom\u00e8ne de Kasabach-Merritt<\/li><\/ul><\/div>\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<\/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 class=\"elementor-section elementor-top-section elementor-element elementor-element-7060e195 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"7060e195\" data-element_type=\"section\">\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-5b409d1b\" data-id=\"5b409d1b\" data-element_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-6a7ea243 elementor-widget elementor-widget-image\" data-id=\"6a7ea243\" data-element_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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"300\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1-300x300.png\" class=\"attachment-medium size-medium wp-image-366\" alt=\"\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1.png 300w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1-150x150.png 150w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1-40x40.png 40w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">L'\u00c9QUIPE<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-3499a81b elementor-widget elementor-widget-toggle\" data-id=\"3499a81b\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-8821\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-8821\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>L'\u00e9quipe<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-8821\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-8821\"><p style=\"text-align: center;\"><span style=\"color: #ed1164;\"><strong>Le trombinoscope de l&#8217;\u00e9quipe MAGEC est disponible en t\u00e9l\u00e9chargement (<em>rubrique &#8220;Documents&#8221; \u00e0 droite de la page<\/em>)<\/strong><\/span>.<\/p><p><strong>\u00c9quipe m\u00e9dicale :<\/strong><\/p><ul><li>Pr Annabel MARUANI \u2013 Dermatologie, m\u00e9decin coordinateur du centre<\/li><li>Dr Gr\u00e9goire BOULOUIS &#8211; Radiologie Interventionnelle<\/li><li>Dr Gabriela GEORGESCOU \u2013 Dermatologie et lasers<\/li><li>Pr Denis HERBRETEAU \u2013 Radiologie interventionnelle<\/li><li>Dr Aline JOLY \u2013 Chirurgie maxillo-faciale p\u00e9diatrique<\/li><li>Dr Sophie LEDUCQ \u2013 Dermatologie<\/li><li>Dr Anne LETOUZE \u2013 Chirurgie visc\u00e9rale et plastique p\u00e9diatrique<\/li><li>Dr Baptiste MOREL \u2013 Radiologie p\u00e9diatrique<\/li><li>Pr Arnaud PARE \u2013 Chirurgie maxillo-faciale<\/li><\/ul><p><strong>\u00c9quipe param\u00e9dicale :<\/strong><\/p><ul><li>Mme St\u00e9phanie CONSTANT \u2013 Infirmi\u00e8re pu\u00e9ricultrice r\u00e9f\u00e9rente<\/li><li>Mme Marie CHAPUT \u2013 Psychologue<\/li><\/ul><p><strong>Laboratoires de diagnostic :<\/strong><\/p><ul><li>Dr Maxime COURTEHOUX \u2013 M\u00e9decine nucl\u00e9aire<\/li><li>Pr Patrick VOURC\u2019H \u2013 Biochimie et g\u00e9n\u00e9tique<\/li><li>Dr Charlotte VEYRAT \u2013 Biochimie et g\u00e9n\u00e9tique<\/li><li>Dr Baptiste MOREL \u2013 Radiologie p\u00e9diatrique<\/li><li>Dr Marie-Christine MACHET \u2013 Anatomie pathologique<\/li><li>Dr Thibaut KERVARREC \u2013 Anatomie pathologique<\/li><\/ul><p><strong>Contact coordination du centre :<\/strong> <a href=\"mailto:a-edee@chu-tours.fr\">a-edee@chu-tours.fr<\/a><\/p><ul><li>Mme Emili\u00e8ne A. \u00c9D\u00c9E \u2013 Assistante de coordination du centre<\/li><\/ul><\/div>\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<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2af2b127 elementor-widget elementor-widget-accordion\" data-id=\"2af2b127\" data-element_type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-accordion{text-align:start}.elementor-accordion .elementor-accordion-item{border:1px solid #d5d8dc}.elementor-accordion .elementor-accordion-item+.elementor-accordion-item{border-top:none}.elementor-accordion 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.elementor-tab-content{display:none;padding:15px 20px;border-top:1px solid #d5d8dc}@media (max-width:767px){.elementor-accordion .elementor-tab-title{padding:12px 15px}.elementor-accordion .elementor-tab-title .elementor-accordion-icon{width:1.2em}.elementor-accordion .elementor-tab-content{padding:7px 15px}}.e-con-inner>.elementor-widget-accordion,.e-con>.elementor-widget-accordion{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-7201\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-7201\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Pour prendre rendez vous :<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-7201\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-7201\"><ul><li><strong>Rdv Consultations pluridisciplinaires d\u2019angiodysplasies enfants<\/strong> <br \/>(Consultations externes de dermatologie et m\u00e9decine p\u00e9diatrique, H\u00f4pital Clocheville)<br \/>T\u00e9l : <strong><span style=\"color: #ed1164;\">02 47 47 47 65 <\/span><\/strong>&#8211; Fax : 02 47 47 87 32 &#8211; Email : <a href=\"mailto:s.constant@chu-tours.fr\">s.constant@chu-tours.fr<\/a><\/li><li><p><strong>RDV Consultations pluridisciplinaires d\u2019angiodysplasies adultes &amp; <\/strong><strong>RDV Radiologie interventionnelle enfants\/adultes <br \/><\/strong>T\u00e9l : <span style=\"color: #ed1164;\"><strong>02 47 47 47 25 <\/strong><\/span>&#8211; Email : <a href=\"mailto:rdv.nri@chu-tours.fr\" target=\"_blank\" rel=\"noopener\">rdv.nri@chu-tours.fr<\/a><\/p><\/li><li><strong>RDV Chirurgie \u00a0visc\u00e9rale et plastique p\u00e9diatrique<\/strong> (H\u00f4pital Clocheville)<br \/>T\u00e9l : <span style=\"color: #ed1164;\"><strong>02 47 47 38 20<\/strong><\/span>\u00a0 &#8211; Email : <a href=\"mailto:chir.visc.plast.ped@chu-tours.fr\" target=\"_blank\" rel=\"noopener\">chir.visc.plast.ped@chu-tours.fr<\/a><\/li><li><strong>RDV Chirurgie maxillo-faciale adulte<\/strong> (H\u00f4pital Trousseau)<br \/>T\u00e9l : <strong><span style=\"color: #ed1164;\">02 47 47 83 47<\/span><\/strong>\u00a0 &#8211; Email : <a href=\"mailto:a.molina@chu-tours.fr\" target=\"_blank\" rel=\"noopener\">a.molina@chu-tours.fr<\/a><\/li><li><strong>RDV Chirurgie maxillo-faciale p\u00e9diatrique<\/strong> (H\u00f4pital Clocheville)<br \/>T\u00e9l : <span style=\"color: #ed1164;\"><strong>02 47 47 38 21<\/strong><\/span> &#8211; Email : \u00a0<a href=\"mailto:chir.maxillo.faciale.plast.ped@chu-tours.fr\" target=\"_blank\" rel=\"noopener\">chir.maxillo.faciale.plast.ped@chu-tours.fr<\/a><br \/><a href=\"\/etre-soigne-et-rendre-visite-a-un-patient\/joindre-le-chru\/formulaires-de-demande-ou-annulation-de-rendez-vous\/demande-de-rendez-vous-de-consultations-externes-de-chirurgie-maxillo-faciale-et-chirurgie-plastique-de-la-face-pediatriques\/\" target=\"_blank\" rel=\"noopener\">Formulaire de demande de rendez-vous avec le service de Chirurgie maxillo-faciale p\u00e9diatrique.<\/a><\/li><li><p><strong>RDV Psychologue enfants\/adultes\/famille<br \/><\/strong>Mme Marie CHAPUT\u00a0 &#8211; Mail : <a href=\"mailto:m.chaput@chu-tours.fr\">m.chaput@chu-tours.fr<\/a><\/p><\/li><li><strong>RDV Dermatologie adultes<\/strong><br \/>T\u00e9l : <span style=\"color: #ed1164;\"><strong>02 47 47 46 07<\/strong><\/span> &#8211; Email : <a href=\"mailto:rdv.dermatologie.adultes@chu-tours.fr\" target=\"_blank\" rel=\"noopener\">rdv.dermatologie.adultes@chu-tours.fr<\/a><\/li><li><p><strong>Assistante de coordination MAGEC\u00a0<br \/><\/strong><strong>Mail\u00a0<\/strong>: <u><a href=\"mailto:a.edee@chu-tours.fr\">a.edee@chu-tours.fr<\/a><\/u><\/p><\/li><li><p><strong>Web : Magec -Tours\u00a0<br \/><\/strong><a href=\"https:\/\/www.chu-tours.fr\/le-chru-et-ses-partenaires\/le-chru-etablissement-dexcellence\/les-centres-de-reference-maladies-rares\/maladies-rares-de-la-peau-et-des-muqueuses-dorigine-genetique-magec\/\" target=\"_blank\" rel=\"noopener\">Centre de R\u00e9f\u00e9rence des maladies rares de la peau et des muqueuses d&#8217;origine g\u00e9n\u00e9tique &#8211; MAGEC (chu-tours.fr)<\/a><\/p><\/li><\/ul><\/div>\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<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-602797bd elementor-widget elementor-widget-accordion\" data-id=\"602797bd\" data-element_type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1611\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1611\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Pour la recherche g\u00e9n\u00e9tique<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1611\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1611\"><strong>Recherche par s\u00e9quen\u00e7age haut d\u00e9bit de pr\u00e9l\u00e8vements sanguin<\/strong>s\u00a0:\n<ul>\n \t<li>Syndrome CM-AVM (malformations capillaires \u2013 malformations art\u00e9rio-veineuses)\u00a0: <em>RASA1<\/em>, <em>EPHB4<\/em><\/li>\n \t<li>Lymph\u0153d\u00e8mes primaires\u00a0: <em>FLT4<\/em>, <em>GJC2<\/em>, <em>VEGFC<\/em>, <em>GATA2<\/em>, <em>KIF11<\/em>, <em>FOXC2<\/em><\/li>\n<\/ul>\n<i class=\"fas fa-user-md fa-2x\"><\/i> Contact : <strong>Dr Charlotte VEYRAT<\/strong> &#8211;\u00a0<a href=\"mailto:c.veyratdurebex@chu-tours.fr\">c.veyratdurebex@chu-tours.fr<\/a><\/div>\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<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-632bdf36 elementor-widget elementor-widget-accordion\" data-id=\"632bdf36\" data-element_type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1661\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1661\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">\u00c9ducation Th\u00e9rapeutique du Patient atteint de lymph\u0153d\u00e8me primaire de membre<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1661\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1661\"><p><b>Programme ETALOM<\/b><\/p><p><i class=\"fas fa-user-md fa-2x\"><\/i> Responsable : <strong>Dr Val\u00e9rie TAUVERON<\/strong><\/p><\/div>\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<\/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 class=\"elementor-section elementor-top-section elementor-element elementor-element-3d581afa elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3d581afa\" data-element_type=\"section\">\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-2608ecd2\" data-id=\"2608ecd2\" data-element_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-2395559e elementor-widget elementor-widget-image\" data-id=\"2395559e\" data-element_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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"240\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/recherche-300x240-1.png\" class=\"attachment-medium size-medium wp-image-369\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">PROTOCOLES EN COURS<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-7d56e84c elementor-widget elementor-widget-toggle\" data-id=\"7d56e84c\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-2101\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-2101\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Protocoles en cours<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-2101\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-2101\"><p>Le centre <strong>MAGEC-Tours<\/strong> participe et coordonne plusieurs protocoles de recherche fondamentale et clinique sur les anomalies vasculaires, institutionnels et industriels.<\/p><p>Pour participer \u00e0 un protocole de recherche clinique, vous pouvez demander conseil \u00e0 votre m\u00e9decin traitant et contacter l\u2019infirmi\u00e8re de recherche du Centre d\u2019Investigation Clinique :<\/p><ul><li><strong>Mme Delphine GUILPAIN et Mme Silvine TAILLARD<\/strong><br \/><a href=\"mailto:cic1415.ic@chu-tours.fr\" target=\"_blank\" rel=\"noopener\">cic1415.ic@chu-tours.fr<\/a><br \/>T\u00e9l : <span style=\"color: #ed1164;\"><strong>02 18 37 06 01<\/strong><\/span><\/li><\/ul><p><strong>Protocoles en cours :\u00a0<\/strong><\/p><p style=\"text-align: center;\"><span style=\"color: #ed1164;\"><strong>Les protocoles sont t\u00e9l\u00e9chargeables dans la rubrique &#8220;Documents&#8221; \u00e0 droite de la page.<\/strong><\/span><\/p><ul><li><strong>TOPICAL (Sirolimus topique 0,1% dans les malformations cutan\u00e9es lymphatiques microkystiques : essai th\u00e9rapeutique de phase II, randomis\u00e9, en double aveugle, en comparaison intra-individuelle versus v\u00e9hicule)<\/strong><\/li><li><strong>TOPICAL FOL-UP<\/strong> <strong>(suivi des patients inclus dans TOPICAL)<\/strong><\/li><li><strong>TOPGUN (Sirolimus local dans les malformations lymphatiques microkystiques de la langue)<\/strong><\/li><li><strong>MARKS (Cr\u00e9ation d\u2019\u00e9chelle d\u2019acceptation de la maladie dermatologie affichante)<\/strong><\/li><li><b>ASPIRIN (Aspirine dans les pouss\u00e9es thrombotiques des malformations veineuses superficielles)<\/b><\/li><li><strong>EPIK-P2 (Alpelisib dans les syndrome CLOVES de l\u2019enfant et de l\u2019adulte : essai th\u00e9rapeutique)<\/strong><\/li><li><strong>EPIK-L1 (Alpelisib dans les malformations lymphatiques kystiques de l\u2019enfant et de l\u2019adulte : essai th\u00e9rapeutique)<\/strong><\/li><\/ul><\/div>\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<\/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 class=\"elementor-section elementor-top-section elementor-element elementor-element-cecb4bc elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"cecb4bc\" data-element_type=\"section\">\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-5cee91bb\" data-id=\"5cee91bb\" data-element_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-2ed5070f elementor-widget elementor-widget-image\" data-id=\"2ed5070f\" data-element_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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"263\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/enseignement-300x263-1.png\" class=\"attachment-medium size-medium wp-image-365\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">ENSEIGNEMENT<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-3ffcc0cc elementor-widget elementor-widget-toggle\" data-id=\"3ffcc0cc\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1071\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1071\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Enseignement<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1071\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1071\"><p>Formation online destin\u00e9e aux dermatologues, p\u00e9diatres, \u00e9ventuellement m\u00e9decins g\u00e9n\u00e9ralistes, et internes, concern\u00e9s par la dermatologie p\u00e9diatrique incluant des cours que les maladies rares cutan\u00e9es, y compris vasculaires et lymphatiques :<\/p><ul><li><a href=\"https:\/\/sfdp.org\/diu.php\" target=\"_blank\" rel=\"noopener\">Dipl\u00f4me inter universitaire en dermatologie p\u00e9diatrique<\/a><\/li><\/ul><\/div>\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<\/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 class=\"elementor-section elementor-top-section elementor-element elementor-element-64730681 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"64730681\" data-element_type=\"section\">\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-70292756\" data-id=\"70292756\" data-element_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-5548ede4 elementor-widget elementor-widget-image\" data-id=\"5548ede4\" data-element_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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"212\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/outils-300x212-1.png\" class=\"attachment-medium size-medium wp-image-367\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">OUTILS<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-64f3e72a elementor-widget elementor-widget-toggle\" data-id=\"64f3e72a\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1691\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1691\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Outils<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1691\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1691\"><h4>Analyses g\u00e9n\u00e9tiques<\/h4><p>Recherche par s\u00e9quen\u00e7age haut d\u00e9bit de pr\u00e9l\u00e8vements sanguins\u00a0:<\/p><ul><li>Panel syndrome CM-AVM (malformations capillaires \u2013 malformations art\u00e9rioveineuses)\u00a0:\u00a0RASA1,\u00a0EPHB4<\/li><li>Panel lymph\u0153d\u00e8mes primaires\u00a0:\u00a0FLT4,\u00a0GJC2,\u00a0VEGFC,\u00a0GATA2,\u00a0KIF11,\u00a0FOXC2<\/li><\/ul><p><strong>Contact<\/strong> : Dr Charlotte VEYRAT \u2013 <a href=\"mailto:c.veyratdurebex@chu-tours.fr\">c.veyratdurebex@chu-tours.fr<\/a><\/p><h4>\u00c9ducation Th\u00e9rapeutique du Patient atteint de lymph\u0153d\u00e8me primaire de membre (enfants, adolescents, adultes)<\/h4><ul><li><strong>Programme ETALOM<\/strong><br \/>Responsable :\u00a0Dr Val\u00e9rie TAUVERON<br \/><span style=\"color: #ed1164;\"><strong>&gt;&gt;<\/strong><\/span> <a href=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2024\/11\/POSTER-ETP-ETALOM.pdf\" target=\"_blank\" rel=\"noopener\">T\u00e9l\u00e9charger le poster<\/a><\/li><\/ul><h4>Maquillage th\u00e9rapeutique (ateliers pour enfants, adolescents, adultes)<\/h4><ul><li><strong>Collaboration MAGEC-Tours et CODES<\/strong><br \/>CODES (Cours d\u2019esth\u00e9tique \u00e0 option humanitaire et sociale) : <a href=\"https:\/\/socio-esthetique.fr\" target=\"_blank\" rel=\"noopener\">https:\/\/socio-esthetique.fr<\/a><\/li><\/ul><h4>PNDS (Protocoles Nationaux de Diagnostic et de Soins)<\/h4><p>L\u2019objectif d\u2019un PNDS est d\u2019expliciter aux professionnels concern\u00e9s la prise en charge diagnostique et th\u00e9rapeutique optimale actuelle et le parcours de soins d\u2019un patient atteint d\u2019une maladie rare donn\u00e9e. Il a pour but d\u2019optimiser et d\u2019harmoniser la prise en charge et le suivi de la maladie rare sur l\u2019ensemble du territoire.<\/p><p>Le PNDS peut servir de r\u00e9f\u00e9rence au m\u00e9decin traitant (m\u00e9decin d\u00e9sign\u00e9 par le patient aupr\u00e8s de la Caisse d\u2019Assurance Maladie) en concertation avec le m\u00e9decin sp\u00e9cialiste notamment au moment d\u2019\u00e9tablir le protocole de soins conjointement avec le m\u00e9decin conseil et le patient, dans le cas d&#8217;une demande d&#8217;exon\u00e9ration du ticket mod\u00e9rateur au titre d&#8217;une affection hors liste (HAS).<\/p><ul><li><strong>PNDS Lymph\u0153d\u00e8mes primaires<\/strong> (2019). <a href=\"https:\/\/www.has-sante.fr\/jcms\/c_2904795\/fr\/lymphoedeme-primaire\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/c_2904795\/fr\/lymphoedeme-primaire<\/a><\/li><li><strong>PNDS Malformations lymphatiques kystiques<\/strong> (2021). <a href=\"https:\/\/www.has-sante.fr\/jcms\/p_3241227\/fr\/malformations-lymphatiques-kystiques-mlk\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/p_3241227\/fr\/malformations-lymphatiques-kystiques-mlk<\/a><\/li><li><strong>PNDS Malformations art\u00e9rioveineuses superficielles<\/strong> (2021). <a href=\"https:\/\/www.has-sante.fr\/jcms\/p_3299827\/fr\/les-malformations-arterio-veineuses-superficielles\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/p_3299827\/fr\/les-malformations-arterio-veineuses-superficielles<\/a><\/li><li><strong>PNDS syndrome de Sturge-Weber (2024)<\/strong>. <a href=\"https:\/\/www.has-sante.fr\/jcms\/p_3493385\/fr\/syndrome-de-sturge-weber\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/p_3493385\/fr\/syndrome-de-sturge-weber<\/a><\/li><\/ul><p>&gt; Retrouvez tous les PNDS sur le site <a href=\"https:\/\/fimarad.org\/les-pnds-maladies-rares-dermatologiques\/\" target=\"_blank\" rel=\"noopener\">Les PNDS \u2013 FIMARAD<\/a><\/p><h4>Cartes d\u2019urgence<\/h4><ul><li>Retrouvez toutes les informations sur les cartes d\u2019urgence sur le site : <a href=\"https:\/\/fimarad.org\/cartes-durgence\/\" target=\"_blank\" rel=\"noopener\">Cartes d\u2019urgence \u2013 FIMARAD<\/a><\/li><\/ul><\/div>\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<\/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 class=\"elementor-section elementor-top-section elementor-element elementor-element-4e25d01f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4e25d01f\" data-element_type=\"section\">\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-4a2312b1\" data-id=\"4a2312b1\" data-element_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-71e0de6 elementor-widget elementor-widget-image\" data-id=\"71e0de6\" data-element_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<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"192\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/liens-300x192-1.png\" class=\"attachment-medium size-medium wp-image-370\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">LIENS<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-f71b38d elementor-widget elementor-widget-toggle\" data-id=\"f71b38d\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-2591\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-2591\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Liens<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-2591\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-2591\"><ul><li><b>Fili\u00e8res<\/b><ul><li>Fili\u00e8re Sant\u00e9 Maladies Rares Dermatologiques FIMARAD : <a href=\"https:\/\/fimarad.org\/\" target=\"_blank\" rel=\"noopener\">https:\/\/fimarad.org\/<\/a><\/li><\/ul><\/li><\/ul><ul><li><b>Soci\u00e9t\u00e9s savantes<\/b><ul><li>Soci\u00e9t\u00e9 Fran\u00e7aise de Dermatologie (SFD) : <a href=\"https:\/\/www.sfdermato.org\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.sfdermato.org\/<\/a><\/li><li>Soci\u00e9t\u00e9 Fran\u00e7aise de Dermatologie P\u00e9diatrique (SFDP) :\u00a0<a href=\"http:\/\/www.sfdp.org\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.sfdp.org\/<\/a><\/li><\/ul><\/li><\/ul><ul><li><b>Associations de patients<\/b><ul><li><a href=\"http:\/\/asso-amla.org\/fr\/\" target=\"_blank\" rel=\"noopener\">Association AMLA<\/a> (Agir pour les Malformations Lymphatiques en Alliance)\u00a0<\/li><li><a href=\"https:\/\/www.facebook.com\/Association-Syndrome-Cloves-1202453779845122\/\" target=\"_blank\" rel=\"noopener\">Association CLOVES<\/a><\/li><li><a href=\"http:\/\/www.anna-asso.fr\/\" target=\"_blank\" rel=\"noopener\"> Association Anna<\/a><\/li><li><strong><a href=\"http:\/\/www.asso-amla.org\/fr\/\" target=\"_blank\" rel=\"noopener\">A.M.L.A.<\/a><\/strong> (Agir pour la Malformation Lymphatique en Alliance)<\/li><li><a href=\"https:\/\/avml.fr\/\" target=\"_blank\" rel=\"noopener\">A.V.M.L.<\/a> (Vivre Mieux le Lymph\u0153d\u00e8me)<\/li><\/ul><\/li><\/ul><\/div>\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<\/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":"<p>Centre de R\u00e9f\u00e9rence des maladies rares de la peau et des muqueuses d\u2019origine g\u00e9n\u00e9tique &#8211; MAGEC Site constitutif de Tours Le centre de R\u00e9f\u00e9rence MAGEC de Tours, coordonn\u00e9 par le Pr Annabel Maruani, est un centre d\u2019expertise pour les anomalies vasculaires et lymphatiques rares, \u00e0 d\u00e9but p\u00e9diatrique. Il a pour triple mission : la prise [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"Centre de R\u00e9f\u00e9rence des maladies rares de la peau et des muqueuses d&#039;origine g\u00e9n\u00e9tique - MAGEC","_seopress_titles_desc":"Le centre MAGEC de Tours, coordonn\u00e9 par le Pr Annabel Maruani, est un centre d\u2019expertise pour les anomalies vasculaires et lymphatiques rares, \u00e0 d\u00e9but p\u00e9diatrique.","_seopress_robots_index":"","_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"publishpress_future_action":{"enabled":false,"date":"2025-06-21 19:38:40","action":"change-status","newStatus":"draft","terms":[],"taxonomy":""},"_links":{"self":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/439"}],"collection":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/comments?post=439"}],"version-history":[{"count":13,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/439\/revisions"}],"predecessor-version":[{"id":2761,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/439\/revisions\/2761"}],"wp:attachment":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/media?parent=439"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}