{"id":259,"date":"2023-01-30T14:26:20","date_gmt":"2023-01-30T13:26:20","guid":{"rendered":"https:\/\/www.chu-tours.fr\/pemr-cvl\/?page_id=259"},"modified":"2023-07-21T15:31:37","modified_gmt":"2023-07-21T13:31:37","slug":"connaitre-les-maladies-rares","status":"publish","type":"page","link":"https:\/\/www.chu-tours.fr\/pemr-cvl\/connaitre-les-maladies-rares\/","title":{"rendered":"Conna\u00eetre les maladies rares"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"259\" class=\"elementor elementor-259\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-4c83784 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4c83784\" 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-d1710ee\" data-id=\"d1710ee\" 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-4760e6b elementor-widget elementor-widget-image\" data-id=\"4760e6b\" 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 fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"241\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/interrogation_web-1024x241.jpg\" class=\"attachment-large size-large wp-image-722\" alt=\"Qu&#039;est-ce qu&#039;une maladie rare ?\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/interrogation_web-1024x241.jpg 1024w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/interrogation_web-300x71.jpg 300w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/interrogation_web-768x181.jpg 768w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/interrogation_web-1536x361.jpg 1536w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/interrogation_web.jpg 2040w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\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-9c9e53d elementor-widget elementor-widget-heading\" data-id=\"9c9e53d\" 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\">Qu\u2019est-ce qu\u2019une maladie rare ?<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e958921 elementor-widget elementor-widget-text-editor\" data-id=\"e958921\" 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<blockquote><p>Une maladie est dite \u00ab\u00a0rare\u00a0\u00bb lorsqu\u2019elle touche moins d\u2019une personne sur 2000, selon la d\u00e9finition retenue en Europe.<\/p><p>Environ 80% des maladies rares sont d\u2019origine g\u00e9n\u00e9tique\u00a0<strong>; <\/strong>il existe aussi des maladies infectieuses rares ainsi que des maladies auto-immunes rares, mais pour un grand nombre de maladies, l\u2019origine demeure inconnue \u00e0 ce jour.<\/p><\/blockquote><p><strong>Ces maladies touchent principalement les enfants bien que certaines apparaissent \u00e0 l\u2019\u00e2ge adulte<\/strong><\/p><p>On emploie le terme de \u00ab\u00a0maladie orpheline\u00a0\u00bb pour d\u00e9signer une pathologie rare ne b\u00e9n\u00e9ficiant pas encore de traitement efficace.<\/p>\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 class=\"elementor-section elementor-top-section elementor-element elementor-element-e04d8ea elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e04d8ea\" 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-587a195\" data-id=\"587a195\" 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-b0fb436 elementor-widget elementor-widget-image\" data-id=\"b0fb436\" 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=\"1670\" height=\"100\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03.png\" class=\"attachment-full size-full wp-image-290\" alt=\"\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03.png 1670w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-300x18.png 300w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-1024x61.png 1024w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-768x46.png 768w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-1536x92.png 1536w\" sizes=\"(max-width: 1670px) 100vw, 1670px\" \/>\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 class=\"elementor-section elementor-top-section elementor-element elementor-element-c4a915d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"c4a915d\" 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-7bcaf4d\" data-id=\"7bcaf4d\" 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-4f35cff elementor-widget elementor-widget-heading\" data-id=\"4f35cff\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Quelques chiffres cl\u00e9s<\/h2>\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-2224476 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2224476\" 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-d6bcf63\" data-id=\"d6bcf63\" 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-7280f30 elementor-widget elementor-widget-counter\" data-id=\"7280f30\" data-element_type=\"widget\" data-widget_type=\"counter.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-counter{display:flex;justify-content:center;align-items:stretch;flex-direction:column-reverse}.elementor-counter .elementor-counter-number{flex-grow:var(--counter-number-grow,0)}.elementor-counter .elementor-counter-number-wrapper{flex:1;display:flex;font-size:69px;font-weight:600;line-height:1;text-align:center}.elementor-counter .elementor-counter-number-prefix{text-align:end;flex-grow:var(--counter-prefix-grow,1);white-space:pre-wrap}.elementor-counter .elementor-counter-number-suffix{text-align:start;flex-grow:var(--counter-suffix-grow,1);white-space:pre-wrap}.elementor-counter .elementor-counter-title{flex:1;display:flex;justify-content:center;align-items:center;margin:0;padding:0;font-size:19px;font-weight:400;line-height:2.5}<\/style>\t\t<div class=\"elementor-counter\">\n\t\t\t<div class=\"elementor-counter-title\">Les maladies rares touchent pr\u00e8s de<br \/> 3 millions de personnes en France<br \/>et 30 millions en Europe<\/div>\t\t\t<div class=\"elementor-counter-number-wrapper\">\n\t\t\t\t<span class=\"elementor-counter-number-prefix\"><\/span>\n\t\t\t\t<span class=\"elementor-counter-number\" data-duration=\"2000\" data-to-value=\"3000000\" data-from-value=\"0\" data-delimiter=\" \">0<\/span>\n\t\t\t\t<span class=\"elementor-counter-number-suffix\"><\/span>\n\t\t\t<\/div>\n\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-9ea7c07 elementor-widget elementor-widget-counter\" data-id=\"9ea7c07\" data-element_type=\"widget\" data-widget_type=\"counter.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-counter\">\n\t\t\t<div class=\"elementor-counter-title\">1 personne sur 20 serait concern\u00e9e<\/div>\t\t\t<div class=\"elementor-counter-number-wrapper\">\n\t\t\t\t<span class=\"elementor-counter-number-prefix\"><\/span>\n\t\t\t\t<span class=\"elementor-counter-number\" data-duration=\"2000\" data-to-value=\"20\" data-from-value=\"0\" data-delimiter=\" \">0<\/span>\n\t\t\t\t<span class=\"elementor-counter-number-suffix\"><\/span>\n\t\t\t<\/div>\n\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-5e8f816\" data-id=\"5e8f816\" 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-947706a elementor-widget elementor-widget-counter\" data-id=\"947706a\" data-element_type=\"widget\" data-widget_type=\"counter.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-counter\">\n\t\t\t<div class=\"elementor-counter-title\"><br \/>Plus de 7000 maladies rares<br \/>sont d\u00e9nombr\u00e9es<\/div>\t\t\t<div class=\"elementor-counter-number-wrapper\">\n\t\t\t\t<span class=\"elementor-counter-number-prefix\"><\/span>\n\t\t\t\t<span class=\"elementor-counter-number\" data-duration=\"2000\" data-to-value=\"7000\" data-from-value=\"0\" data-delimiter=\" \">0<\/span>\n\t\t\t\t<span class=\"elementor-counter-number-suffix\"><\/span>\n\t\t\t<\/div>\n\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-b3c004f elementor-widget elementor-widget-counter\" data-id=\"b3c004f\" data-element_type=\"widget\" data-widget_type=\"counter.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-counter\">\n\t\t\t<div class=\"elementor-counter-title\">D\u00e9lai moyen pour poser un diagnostic<br \/>et plus de 5 ans pour \u00bc des personnes atteintes<\/div>\t\t\t<div class=\"elementor-counter-number-wrapper\">\n\t\t\t\t<span class=\"elementor-counter-number-prefix\"><\/span>\n\t\t\t\t<span class=\"elementor-counter-number\" data-duration=\"2000\" data-to-value=\"18\" data-from-value=\"0\" data-delimiter=\" \">0<\/span>\n\t\t\t\t<span class=\"elementor-counter-number-suffix\">mois<\/span>\n\t\t\t<\/div>\n\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-43187db elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"43187db\" 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-1879c23\" data-id=\"1879c23\" 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-36b3933 elementor-widget elementor-widget-image\" data-id=\"36b3933\" 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=\"1670\" height=\"100\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03.png\" class=\"attachment-full size-full wp-image-290\" alt=\"\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03.png 1670w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-300x18.png 300w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-1024x61.png 1024w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-768x46.png 768w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/div03-1536x92.png 1536w\" sizes=\"(max-width: 1670px) 100vw, 1670px\" \/>\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 class=\"elementor-section elementor-top-section elementor-element elementor-element-de6b43c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"de6b43c\" 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-88d44e5\" data-id=\"88d44e5\" 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-aa8b4f2 elementor-button-danger elementor-align-center elementor-widget elementor-widget-button\" data-id=\"aa8b4f2\" data-element_type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-xl\" href=\"https:\/\/www.orpha.net\/consor4.01\/www\/cgi-bin\/?lng=FR\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">S\u2019informer sur les maladies rares<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\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-05649dc elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"05649dc\" 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-bc17112\" data-id=\"bc17112\" 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-67d3f89 elementor-widget elementor-widget-global elementor-global-1287 elementor-widget-html\" data-id=\"67d3f89\" data-element_type=\"widget\" data-widget_type=\"html.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<!--fermeture accord\u00e9on -->\r\n<script> \r\n\tjQuery(document).ready(function($) { \r\n\tvar delay = 100; setTimeout(function() { \r\n\t$('.elementor-tab-title').removeClass('elementor-active');\r\n\t$('.elementor-tab-content').css('display', 'none'); }, delay); \r\n\t}); \r\n<\/script>\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-fb1f4b8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"fb1f4b8\" 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-dbe4fd8\" data-id=\"dbe4fd8\" 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-3de2ac3 elementor-widget elementor-widget-accordion\" data-id=\"3de2ac3\" 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 .elementor-tab-title{margin:0;padding:15px 20px;font-weight:700;line-height:1;cursor:pointer;outline:none}.elementor-accordion .elementor-tab-title .elementor-accordion-icon{display:inline-block;width:1.5em}.elementor-accordion .elementor-tab-title .elementor-accordion-icon svg{width:1em;height:1em}.elementor-accordion .elementor-tab-title .elementor-accordion-icon.elementor-accordion-icon-right{float:right;text-align:right}.elementor-accordion .elementor-tab-title .elementor-accordion-icon.elementor-accordion-icon-left{float:left;text-align:left}.elementor-accordion .elementor-tab-title .elementor-accordion-icon .elementor-accordion-icon-closed{display:block}.elementor-accordion .elementor-tab-title .elementor-accordion-icon .elementor-accordion-icon-opened,.elementor-accordion .elementor-tab-title.elementor-active .elementor-accordion-icon-closed{display:none}.elementor-accordion .elementor-tab-title.elementor-active .elementor-accordion-icon-opened{display:block}.elementor-accordion .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-6481\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-6481\" 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\">Probl\u00e9matiques rencontr\u00e9es<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-6481\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-6481\"><p>Les patients concern\u00e9s par une maladie rare rencontrent diff\u00e9rentes difficult\u00e9s\u00a0:<\/p><ul><li>isolement, difficult\u00e9 d\u2019acc\u00e8s au diagnostic, \u00e0 l\u2019information et aux soins,<\/li><li>errance diagnostique, prise en charge souvent complexe, impliquant de nombreux acteurs et des d\u00e9lais de prise en charge souvent longs.<\/li><\/ul><p>Les <strong>Centres de R\u00e9f\u00e9rence et les Centres de Comp\u00e9tences Maladies Rares<\/strong>, <strong>la Fondation Maladies Rares<\/strong> et les <strong>Fili\u00e8res de Sant\u00e9 Maladies Rares<\/strong> ont \u00e9t\u00e9 cr\u00e9\u00e9s pour pallier \u00a0ces diff\u00e9rentes probl\u00e9matiques et ce, gr\u00e2ce \u00e0 3 <strong>Plans Nationaux Maladies Rares.<\/strong><\/p><p><span style=\"color: #ed1164;\">Pour plus d\u2019info :<\/span><\/p><p><strong><span style=\"color: #ed1164;\">&gt;&gt;<\/span><\/strong> <a href=\"https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/\" target=\"_blank\" rel=\"noopener\">https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/<\/a><\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-6482\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-6482\" 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\">Une organisation sp\u00e9cifique en France et en Europe<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-6482\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-6482\"><p>La France joue un r\u00f4le pionnier dans le domaine des maladies rares\u00a0:<\/p><ul><li>elle est le 1<sup>er<\/sup> pays en Europe \u00e0 avoir \u00e9labor\u00e9 et mis en \u0153uvre un Plan National Maladies Rares (<a href=\"https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/\" target=\"_blank\" rel=\"noopener\"><strong>PNMR<\/strong><\/a>) pour am\u00e9liorer et structurer la prise en charge des Maladies Rares.<\/li><li>C\u2019est ainsi qu\u2019ont \u00e9t\u00e9 labellis\u00e9s successivement :<ul><li>dans les \u00e9tablissements hospitaliers des centres experts sur les maladies rares,<\/li><li>des Fili\u00e8res de Sant\u00e9 Maladies Rares (FSMR),<\/li><li>des Plateformes d\u2019Expertise Maladies Rares (PEMR)et des Plateformes de Coordination maladies rares Outre-Mer (PCOM).<\/li><\/ul><\/li><\/ul><p><strong><span style=\"color: #ed1164;\">&gt;&gt;<\/span> <a href=\"https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/\" target=\"_blank\" rel=\"noopener\">En savoir +<\/a><\/strong><\/p><p>Ces diff\u00e9rents plans contribuent \u00e0 une structuration avec une organisation en r\u00e9seau sur diff\u00e9rents niveaux :<\/p><ul><li><strong>Local et r\u00e9gional<\/strong><\/li><li><strong>National<\/strong><\/li><li><strong>Europ\u00e9en<\/strong><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-6483\" class=\"elementor-tab-title\" data-tab=\"3\" role=\"button\" aria-controls=\"elementor-tab-content-6483\" 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\">Les Centres labellis\u00e9s Maladies Rares<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-6483\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"3\" role=\"region\" aria-labelledby=\"elementor-tab-title-6483\"><p>Un Centre de R\u00e9f\u00e9rence rassemble une \u00e9quipe hospitali\u00e8re hautement sp\u00e9cialis\u00e9e ayant une expertise av\u00e9r\u00e9e pour une maladie rare ou un groupe de maladies rares.<\/p><p><strong>Ses missions sont<\/strong> :<\/p><ul><li>faciliter le diagnostic et d\u00e9finir une strat\u00e9gie de prise en charge th\u00e9rapeutique, psychologique et d\u2019accompagnement social ;<\/li><li>d\u00e9finir et diffuser des protocoles de prise en charge, coordonner les travaux de recherche et participer \u00e0 la surveillance \u00e9pid\u00e9miologique ;<\/li><li>participer \u00e0 des actions de formation et d\u2019information pour les professionnels de sant\u00e9, les malades et leurs familles;<\/li><li>animer et coordonner les r\u00e9seaux de correspondants sanitaires et m\u00e9dico-sociaux ;<\/li><li>\u00eatre un interlocuteur privil\u00e9gi\u00e9 pour les tutelles et les associations de malades.<\/li><\/ul><p>Un centre labellis\u00e9 maladies rares peut \u00eatre d\u00e9sign\u00e9 en qualit\u00e9 de :<\/p><ul><li><strong>Centre de R\u00e9f\u00e9rence Coordonnateur<\/strong>, lorsqu\u2019il assure, au niveau national ou interregional, le pilotage d\u2019un r\u00e9seau de Centres de R\u00e9f\u00e9rence Maladies Rares d\u00e9di\u00e9s \u00e0 une maladie ou un groupe de maladies rares<\/li><li><strong>Centre de R\u00e9f\u00e9rence Constitutif<\/strong>, lorsqu&#8217;il assure au niveau r\u00e9gional une prise en charge compl\u00e9mentaire \u00e0 celle d\u2019un Centre de R\u00e9f\u00e9rence Coordonnateur.\u00a0<\/li><li><strong>Centre de Comp\u00e9tences (CCMR) et Centre de Ressources et de Comp\u00e9tence (CRC)<\/strong>, lorsqu&#8217;il assure la prise en charge et le suivi des patients, \u00e0 proximit\u00e9 de leur domicile et participe \u00e0 l\u2019ensemble des missions des centres de r\u00e9f\u00e9rence.\u00a0<\/li><\/ul><p>Les Centres Maladies Rares sont labellis\u00e9s pour une p\u00e9riode de 5 ans et sont financ\u00e9s, \u00e0 l&#8217;exception des Centres de Comp\u00e9tences, par une enveloppe budg\u00e9taire sp\u00e9cifique (Minist\u00e8re de la Sant\u00e9).<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-6484\" class=\"elementor-tab-title\" data-tab=\"4\" role=\"button\" aria-controls=\"elementor-tab-content-6484\" 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\">Les Plateformes d\u2019Expertise Maladies Rares (PEMR)<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-6484\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"4\" role=\"region\" aria-labelledby=\"elementor-tab-title-6484\"><p><strong>Les Plateformes d\u2019Expertise Maladies Rares (PEMR) et les Plateformes de Coordination maladies rares Outre-Mer (PCOM) <\/strong>constituent un dispositif de coordination \u00e0 l\u2019\u00e9chelle d\u2019un territoire<\/p><p>Elles ont \u00e9t\u00e9 r\u00e9cemment labellis\u00e9es et financ\u00e9es par le Minist\u00e8re de la Sant\u00e9\u00a0 pour r\u00e9pondre \u00e0 plusieurs objectifs du Plan National Maladies rares 3 (PNMR 3)\u00a0:<\/p><ul><li>Am\u00e9liorer le parcours de soins et le parcours de vie des personnes malades et de leurs proches<\/li><li>Renforcer le r\u00f4le des Fili\u00e8res de Sant\u00e9 Maladies Rares \u00e0 l\u2019\u00e9chelle des territoires<\/li><li>Donner de la visibilit\u00e9 aux Centres de R\u00e9f\u00e9rence et Centres de Comp\u00e9tence\u00a0 Maladies Rares d\u2019un territoire<\/li><\/ul><p><strong style=\"font-size: 1rem; text-align: left;\"><span style=\"font-size: 14pt;\">La PEMR CVL a \u00e9t\u00e9 labellis\u00e9e en 2021.<\/span><\/strong><\/p><h3><a href=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/01\/2.1-qui-sommes-nous-Annuaire-PEMR-PCOM-juin-2022.pdf\" target=\"_blank\" rel=\"noopener\">Cartographie nationale des plateformes d\u2019expertises maladies rares<\/a><\/h3><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-6485\" class=\"elementor-tab-title\" data-tab=\"5\" role=\"button\" aria-controls=\"elementor-tab-content-6485\" 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\">Les Fili\u00e8res de Sant\u00e9 Maladies Rares <\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-6485\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"5\" role=\"region\" aria-labelledby=\"elementor-tab-title-6485\"><h3><a href=\"https:\/\/www.filieresmaladiesrares.fr\/\" target=\"_blank\" rel=\"noopener\">Les Fili\u00e8res de Sant\u00e9 Maladies Rares<\/a> (FSMR) :<\/h3><p>23 fili\u00e8res de Sant\u00e9 Maladies rares regroupent, en un r\u00e9seau national par th\u00e9matiques de maladies, les centres labellis\u00e9s, des laboratoires de diagnostic et des \u00e9quipes de recherche, des soci\u00e9t\u00e9s savantes, des associations de patients ainsi que divers partenaires du monde universitaire, m\u00e9dico-social ou associatif, dans le but de d\u00e9velopper les synergies entre les diff\u00e9rents acteurs.<\/p><ul><li>Site <a href=\"https:\/\/www.filieresmaladiesrares.fr\/\" target=\"_blank\" rel=\"noopener\">filieresmaladiesrares.fr<\/a><\/li><\/ul><p><strong>Les missions principales des fili\u00e8res sont<\/strong>\u00a0:<\/p><ul><li>d\u2019am\u00e9liorer la prise en charge des patients<\/li><li>de coordonner et encourager la recherche<\/li><li>de d\u00e9velopper la formation et l\u2019information<\/li><li>de participer aux r\u00e9seaux europ\u00e9ens<\/li><\/ul>\t\t<div data-elementor-type=\"section\" data-elementor-id=\"1465\" class=\"elementor elementor-1465\" data-elementor-post-type=\"elementor_library\">\n\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-22b3653a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"22b3653a\" 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-64307631\" data-id=\"64307631\" 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-af066ab elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"af066ab\" 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-6a197e67\" data-id=\"6a197e67\" 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-836d1f7 elementor-widget elementor-widget-image\" data-id=\"836d1f7\" 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\t<a href=\"https:\/\/www.chu-tours.fr\/wp-content\/uploads\/2019\/12\/carto-reseau-mr.png\" data-elementor-open-lightbox=\"yes\" data-elementor-lightbox-title=\"Trombinoscope \u00e9quipe param\u00e9dicale MVF\" data-elementor-lightbox-description=\"&lt;link rel=&quot;stylesheet&quot; href=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/plugins\/elementor\/assets\/css\/widget-icon-box.min.css&quot;&gt;\t\t\n\t\t\t\t\t\t\t\t\t&lt;h3&gt;\n\t\t\t\t\t\t\tL&#039;\u00e9quipe param\u00e9dicale\t\t\t\t\t\t\n\t\t\t\t\t&lt;\/h3&gt;\n\t\t\t\t\t\t\t\t\t&lt;p&gt;\n\t\t\t\t\t\t&lt;br \/&gt;\t\t\t\t\t&lt;\/p&gt;\n\t\t\t&lt;link rel=&quot;stylesheet&quot; href=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/plugins\/elementor-pro\/assets\/css\/widget-call-to-action.min.css?ver=1721048726&quot;&gt;\t\t\n\t\t\t\t\t\t&lt;img width=&quot;272&quot; height=&quot;300&quot; src=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/01\/Charlotte-ARC_272x300.png&quot; alt=&quot;Charlotte FRAPPEREAU&quot; \/&gt;\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t&lt;h2&gt;\n\t\t\t\t\t\t&lt;strong&gt;Mme FRAPPREAU&lt;br \/&gt;&lt;\/strong&gt;Charlotte \t\t\t\t\t&lt;\/h2&gt;\n\t\t\t\t\t\t&lt;br \/&gt;Attach\u00e9e de Recherche Clinique\t\t\t\t\t\n\t\t\t\t\t\t&lt;img width=&quot;272&quot; height=&quot;300&quot; src=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/01\/Natacha-Secretaire_272x300.png&quot; alt=&quot;Natacha HEUDE&quot; \/&gt;\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t&lt;h2&gt;\n\t\t\t\t\t\t&lt;strong&gt;Mme HEUDE&lt;br \/&gt;&lt;\/strong&gt;Natacha \t\t\t\t\t&lt;\/h2&gt;\n\t\t\t\t\t\t&lt;br \/&gt; Secr\u00e9taire\t\t\t\t\t\n\t\t\t\t\t\t&lt;img width=&quot;272&quot; height=&quot;300&quot; src=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/01\/silhouette_femme_272x300.png&quot; alt=&quot;silhouette femme&quot; \/&gt;\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t&lt;h2&gt;\n\t\t\t\t\t\t&lt;strong&gt;Mme PAYEN&lt;br \/&gt;&lt;\/strong&gt;Lucie\t\t\t\t\t&lt;\/h2&gt;\n\t\t\t\t\t\t&lt;br \/&gt;Di\u00e9t\u00e9ticienne\t\t\t\t\t\n\t\t\t\t\t\t&lt;img width=&quot;272&quot; height=&quot;300&quot; src=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/01\/MVF-Marion-MARTINS-ARC_272x300.png&quot; alt=&quot;Marion MARTINS&quot; \/&gt;\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t&lt;h2&gt;\n\t\t\t\t\t\t&lt;strong&gt;Mme MARTINS&lt;\/strong&gt;&lt;br \/&gt;Marion\t\t\t\t\t&lt;\/h2&gt;\n\t\t\t\t\t\t&lt;br&gt;Attach\u00e9e de Recherche Clinique\t\t\t\t\t\n\t\t\t\t\t\t&lt;img width=&quot;272&quot; height=&quot;300&quot; src=&quot;https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/01\/silhouette_femme_272x300.png&quot; alt=&quot;silhouette femme&quot; \/&gt;\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t&lt;h2&gt;\n\t\t\t\t\t\t&lt;strong&gt;Mme LACOM &lt;br \/&gt;&lt;\/strong&gt;\u00c9milie\t\t\t\t\t&lt;\/h2&gt;\n\t\t\t\t\t\t&lt;br \/&gt;Infirmi\u00e8re de coordination\t\t\t\t\t\n\t\t\t&lt;style&gt;\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-column .elementor-spacer-inner{height:var(--spacer-size)}.e-con{--container-widget-width:100%}.e-con-inner&gt;.elementor-widget-spacer,.e-con&gt;.elementor-widget-spacer{width:var(--container-widget-width,var(--spacer-size));--align-self:var(--container-widget-align-self,initial);--flex-shrink:0}.e-con-inner&gt;.elementor-widget-spacer&gt;.elementor-widget-container,.e-con&gt;.elementor-widget-spacer&gt;.elementor-widget-container{height:100%;width:100%}.e-con-inner&gt;.elementor-widget-spacer&gt;.elementor-widget-container&gt;.elementor-spacer,.e-con&gt;.elementor-widget-spacer&gt;.elementor-widget-container&gt;.elementor-spacer{height:100%}.e-con-inner&gt;.elementor-widget-spacer&gt;.elementor-widget-container&gt;.elementor-spacer&gt;.elementor-spacer-inner,.e-con&gt;.elementor-widget-spacer&gt;.elementor-widget-container&gt;.elementor-spacer&gt;.elementor-spacer-inner{height:var(--container-widget-height,var(--spacer-size))}.e-con-inner&gt;.elementor-widget-spacer.elementor-widget-empty,.e-con&gt;.elementor-widget-spacer.elementor-widget-empty{position:relative;min-height:22px;min-width:22px}.e-con-inner&gt;.elementor-widget-spacer.elementor-widget-empty .elementor-widget-empty-icon,.e-con&gt;.elementor-widget-spacer.elementor-widget-empty .elementor-widget-empty-icon{position:absolute;top:0;bottom:0;left:0;right:0;margin:auto;padding:0;width:22px;height:22px}&lt;\/style&gt;\t\t\n\t\t\t&lt;a href=&quot;mailto:coordination.foie@chu-tours.fr&quot;&gt;\n\t\t\t\t\t\t\t\t\tcoordination.foie@chu-tours.fr\n\t\t\t\t\t&lt;\/a&gt;\" data-e-action-hash=\"#elementor-action%3Aaction%3Dlightbox%26settings%3DeyJpZCI6IjM0OTAiLCJ1cmwiOmZhbHNlfQ%3D%3D\">\n\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/www.chu-tours.fr\/wp-content\/uploads\/2019\/12\/carto-reseau-mr.png\" title=\"\" alt=\"\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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-4b4336d5\" data-id=\"4b4336d5\" 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-71d8dcb8 elementor-widget elementor-widget-menu-anchor\" data-id=\"71d8dcb8\" data-element_type=\"widget\" data-widget_type=\"menu-anchor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\nbody.elementor-page .elementor-widget-menu-anchor{margin-bottom:0}<\/style>\t\t<div class=\"elementor-menu-anchor\" id=\"niveau-local\"><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-bb9d46e elementor-widget elementor-widget-image\" data-id=\"bb9d46e\" 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\t<a href=\"https:\/\/www.chu-tours.fr\/wp-content\/uploads\/2020\/01\/filieres-sante-mr.png\" data-elementor-open-lightbox=\"yes\" data-e-action-hash=\"#elementor-action%3Aaction%3Dlightbox%26settings%3DeyJpZCI6IjUxMzUiLCJ1cmwiOmZhbHNlfQ%3D%3D\">\n\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/www.chu-tours.fr\/wp-content\/uploads\/2020\/01\/filieres-sante-mr.png\" title=\"\" alt=\"\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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\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<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-6486\" class=\"elementor-tab-title\" data-tab=\"6\" role=\"button\" aria-controls=\"elementor-tab-content-6486\" 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\">Les R\u00e9seaux Europ\u00e9ens de R\u00e9f\u00e9rence Maladies Rares <\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-6486\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"6\" role=\"region\" aria-labelledby=\"elementor-tab-title-6486\"><p>24 r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence maladies rares (European Reference Network\u00a0: <strong>ERN<\/strong>) ont \u00e9t\u00e9 labellis\u00e9s par la Commission Europ\u00e9enne fin 2016.<\/p><p>Les ERN sont des r\u00e9seaux virtuels utilisant notamment une plateforme informatique sur mesure et des outils de t\u00e9l\u00e9m\u00e9decine pour examiner les cas de patients. Dans la mesure du possible, ils veillent \u00e0 ce que l\u2019information circule plut\u00f4t que le patient, afin d\u2019assurer la meilleure prise en charge possible au plus proche du domicile du patient. Ils sont promoteurs de travaux de recherche internationaux sur les maladies qui les concernent et pilotent des actions de formation.<\/p><p>Les 24 premiers ERN concernent plus de 900 unit\u00e9s de soins de sant\u00e9 hautement sp\u00e9cialis\u00e9es de plus de 300 h\u00f4pitaux dans 26 \u00c9tats membres.<\/p><p><strong>&gt;&gt; En savoir +<\/strong><\/p>\t\t<div data-elementor-type=\"section\" data-elementor-id=\"1029\" class=\"elementor elementor-1029\" data-elementor-post-type=\"elementor_library\">\n\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6e63765e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6e63765e\" 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-728fa114\" data-id=\"728fa114\" 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-6e1ed683 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6e1ed683\" 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-33 elementor-inner-column elementor-element elementor-element-37a20387\" data-id=\"37a20387\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-66 elementor-inner-column elementor-element elementor-element-6c2890ff\" data-id=\"6c2890ff\" 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-31096c5b elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"31096c5b\" data-element_type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<link rel=\"stylesheet\" href=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/plugins\/elementor\/assets\/css\/widget-icon-list.min.css\">\t\t<ul class=\"elementor-icon-list-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/article\/les-reseaux-europeens-de-reference-maladies-rares-ern\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-info-circle\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Sur le site du Minist\u00e8re des Solidarit\u00e9s et de la Sant\u00e9<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/ec.europa.eu\/health\/ern_fr\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-info-circle\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">https:\/\/ec.europa.eu\/health\/ern_fr<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.eurordis.org\/fr\/european-reference-networks\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-info-circle\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">https:\/\/www.eurordis.org\/fr\/european-reference-networks<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.ejprarediseases.org\/\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-info-circle\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">https:\/\/www.ejprarediseases.org\/<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\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<\/div>\n\t\t<\/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-84cc65c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"84cc65c\" 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-ee2964e\" data-id=\"ee2964e\" 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-614dac1 elementor-widget elementor-widget-heading\" data-id=\"614dac1\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Liens<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0346b11 elementor-widget elementor-widget-accordion\" data-id=\"0346b11\" 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-3431\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-3431\" 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\">Liens utiles<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-3431\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-3431\"><ul><li><a href=\"https:\/\/handicap.gouv.fr\/autisme-et-troubles-du-neuro-developpement\/intervenir-precocement-aupres-des-enfants\/plateformes-tnd\" target=\"_blank\" rel=\"noopener\">Les plateformes de coordination et d\u2019orientation TND<\/a><\/li><li>Plan National Maladies Rares : <a href=\"https:\/\/solidarites-sante.gouv.fr\" target=\"_blank\" rel=\"noopener\">https:\/\/solidarites-sante.gouv.fr<\/a><\/li><li>ORPHANET &#8211; portail des maladies rares et des m\u00e9dicaments orphelins : <a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/index.php\" target=\"_blank\" rel=\"noopener\">https:\/\/www.orpha.net\/consor\/cgi-bin\/index.php<\/a><\/li><li>Les cahiers d\u2019orphanet : <a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Education.php?lng=FR\" target=\"_blank\" rel=\"noopener\">https:\/\/www.orpha.net\/consor\/cgi-bin\/Education.php?lng=FR<\/a><\/li><li>Maladies Rares Info Services : <a href=\"https:\/\/www.maladiesraresinfo.org\" target=\"_blank\" rel=\"noopener\">https:\/\/www.maladiesraresinfo.org<\/a><br \/><em>Maladies Rares Info Services<\/em> est un forum maladies rares destin\u00e9 \u00e0\u00a0 \u00eatre \u00e9cout\u00e9, poser des questions \u00e0 des professionnels; t\u00e9moigner et \u00e9changer avec d\u2019autres personnes ; s\u2019informer et se former sur les maladies rares<\/li><li><a href=\"https:\/\/www.reseauneurocentre.fr\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.reseauneurocentre.fr\/<\/a><\/li><li><a href=\"https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/\" target=\"_blank\" rel=\"noopener\">https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/<\/a><\/li><li><a href=\"https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/article\/les-reseaux-europeens-de-reference-maladies-rares-ern\" target=\"_blank\" rel=\"noopener\">https:\/\/solidarites-sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/article\/les-reseaux-europeens-de-reference-maladies-rares-ern<\/a><\/li><li><a href=\"https:\/\/ec.europa.eu\/health\/ern_fr\" target=\"_blank\" rel=\"noopener\">https:\/\/ec.europa.eu\/health\/ern_fr<\/a><\/li><li><a href=\"https:\/\/www.eurordis.org\/fr\/european-reference-networks\" target=\"_blank\" rel=\"noopener\">https:\/\/www.eurordis.org\/fr\/european-reference-networks<\/a><\/li><li><a href=\"https:\/\/www.ejprarediseases.org\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.ejprarediseases.org\/<\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-3432\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-3432\" 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\">Liens utiles vers les fili\u00e8res<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-3432\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-3432\"><ul><li><strong>AnDDI-Rares \u2013 Anomalies du d\u00e9veloppement et d\u00e9ficience intellectuelle de causes rares <\/strong>&#8211; <a href=\"http:\/\/www.anddi-rares.org\" target=\"_blank\" rel=\"noopener\">www.anddi-rares.org<\/a><\/li><li><strong>BRAIN-TEAM \u2013 Maladies rares \u00e0 expression motrice ou cognitive du syst\u00e8me nerveux central<\/strong> &#8211; <a href=\"http:\/\/brain-team.fr\/\" target=\"_blank\" rel=\"noopener\">www.brain-team.fr<\/a><\/li><li><strong>CARDIOGEN \u2013 Maladies cardiaques h\u00e9r\u00e9ditaires<\/strong> : <a href=\"http:\/\/www.filiere-cardiogen.fr\" target=\"_blank\" rel=\"noopener\">www.filiere-cardiogen.fr<\/a><\/li><li><strong>D\u00e9fiScience \u2013 Maladies rares du d\u00e9veloppement c\u00e9r\u00e9bral et d\u00e9ficience intellectuelle<\/strong> &#8211; <a href=\"http:\/\/www.defiscience.fr\" target=\"_blank\" rel=\"noopener\">www.defiscience.fr<\/a><\/li><li><strong>FAI\u00b2R \u2013 Maladies auto-immunes et auto-inflammatoires syst\u00e9miques rares<\/strong> : <a href=\"http:\/\/www.fai2r.org\" target=\"_blank\" rel=\"noopener\">www.fai2r.org<\/a><\/li><li><strong>FAVA MULTI Maladie vasculaire rare \u00e0 atteinte multi-syst\u00e9mique<\/strong> &#8211; <a href=\"https:\/\/www.favamulti.fr\" target=\"_blank\" rel=\"noopener\">https:\/\/www.favamulti.fr<\/a><\/li><li><strong>FILFOIE \u2013 Maladies h\u00e9patiques rares de l\u2019enfant et de l\u2019adulte<\/strong> : <a href=\"https:\/\/www.filfoie.com\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.filfoie.com\/<\/a><\/li><li><strong>FILNEMUS \u2013 Maladies neuromusculaires<\/strong> : <a href=\"http:\/\/www.filnemus.fr\" target=\"_blank\" rel=\"noopener\">www.filnemus.fr<\/a><\/li><li><strong>FILSLAN \u2013 Scl\u00e9rose lat\u00e9rale amyotrophique<\/strong> : <a href=\"https:\/\/portail-sla.fr\" target=\"_blank\" rel=\"noopener\">https:\/\/portail-sla.fr<\/a><\/li><li><strong>FIMARAD \u2013 Maladies rares en dermatologie<\/strong> : <a href=\"https:\/\/fimarad.org\/\" target=\"_blank\" rel=\"noopener\">www.fimarad.org<\/a><\/li><li><strong>FIMATHO \u2013 Malformations abdomino-thoraciques<\/strong> : <a href=\"http:\/\/www.fimatho.fr\" target=\"_blank\" rel=\"noopener\">www.fimatho.fr<\/a><\/li><li><strong>FIRENDO \u2013 Maladies rares endocriniennes<\/strong> : <a href=\"http:\/\/www.firendo.fr\" target=\"_blank\" rel=\"noopener\">www.firendo.fr<\/a><\/li><li><strong>G2M \u2013 Maladies h\u00e9r\u00e9ditaires du m\u00e9tabolisme<\/strong> : <a href=\"http:\/\/www.filiere-g2m.fr\" target=\"_blank\" rel=\"noopener\">www.filiere-g2m.fr<\/a><\/li><li><strong>MARIH \u2013 Maladies rares immuno-h\u00e9matologiques<\/strong> : <a href=\"http:\/\/www.marih.fr\" target=\"_blank\" rel=\"noopener\">www.marih.fr<\/a><\/li><li><strong>MCGRE \u2013 Maladies constitutionnelles rares du globule rouge et de l\u2019\u00e9rythropo\u00ef\u00e8se<\/strong> : <a href=\"http:\/\/www.filiere-mcgre.fr\" target=\"_blank\" rel=\"noopener\">www.filiere-mcgre.fr<\/a><\/li><li><strong>MH\u00e9mo \u2013 Maladies h\u00e9morragiques constitutionnelles<\/strong> : <a href=\"https:\/\/mhemo.fr\" target=\"_blank\" rel=\"noopener\">https:\/\/mhemo.fr<\/a><\/li><li><strong>Muco\/CFTR \u2013 Muscoviscidose et affections li\u00e9es \u00e0 une anomalie de CFTR<\/strong> : <a href=\"https:\/\/muco-cftr.fr\/index.php\/fr\" target=\"_blank\" rel=\"noopener\">https:\/\/muco-cftr.fr\/index.php\/fr<\/a><\/li><li><strong>NeuroSphinx \u2013 Complications neurologiques et sphinct\u00e9riennes des malformations pelviennes et m\u00e9dullaires rares<\/strong> : <a href=\"http:\/\/www.neurosphinx.fr\" target=\"_blank\" rel=\"noopener\">www.neurosphinx.fr<\/a><\/li><li><strong>ORKID \u2013 Maladies r\u00e9nales rares<\/strong> : <a href=\"http:\/\/www.filiereorkid.com\" target=\"_blank\" rel=\"noopener\">www.filiereorkid.com<\/a><\/li><li><strong>OSCAR \u2013 Maladies rares de l\u2019os, du calcium et du cartilage<\/strong> : <a href=\"https:\/\/www.filiere-oscar.fr\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.filiere-oscar.fr\/<\/a><\/li><li><strong>RespiFIL \u2013 Maladies respiratoires rares<\/strong> : <a href=\"http:\/\/www.respifil.fr\" target=\"_blank\" rel=\"noopener\">www.respifil.fr<\/a><\/li><li><strong>TETECOU \u2013 Maladies rares de la t\u00eate, du cou et des dents<\/strong> : <a href=\"https:\/\/www.tete-cou.fr\" target=\"_blank\" rel=\"noopener\">https:\/\/www.tete-cou.fr<\/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-c72763a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"c72763a\" 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-d774dcf\" data-id=\"d774dcf\" 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-3e21ae2 elementor-widget elementor-widget-heading\" data-id=\"3e21ae2\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">- Vid\u00e9o -<br \/><br \/>\u00ab Tout savoir sur les Fili\u00e8res de Sant\u00e9 \u00bb<br \/> (ORKID) <\/h3>\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-08cb42f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"08cb42f\" 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-33 elementor-inner-column elementor-element elementor-element-7f150e7\" data-id=\"7f150e7\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-f83deb1\" data-id=\"f83deb1\" 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-bb471b5 elementor-widget elementor-widget-video\" data-id=\"bb471b5\" data-element_type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/AVgRdVaJR7k&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.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-video .elementor-widget-container{overflow:hidden;transform:translateZ(0)}.elementor-widget-video .elementor-wrapper{aspect-ratio:var(--video-aspect-ratio)}.elementor-widget-video .elementor-wrapper iframe,.elementor-widget-video .elementor-wrapper video{height:100%;width:100%;display:flex;border:none;background-color:#000}@supports not (aspect-ratio:1\/1){.elementor-widget-video .elementor-wrapper{position:relative;overflow:hidden;height:0;padding-bottom:calc(100% \/ var(--video-aspect-ratio))}.elementor-widget-video .elementor-wrapper iframe,.elementor-widget-video .elementor-wrapper video{position:absolute;top:0;right:0;bottom:0;left:0}}.elementor-widget-video .elementor-open-inline .elementor-custom-embed-image-overlay{position:absolute;top:0;right:0;bottom:0;left:0;background-size:cover;background-position:50%}.elementor-widget-video .elementor-custom-embed-image-overlay{cursor:pointer;text-align:center}.elementor-widget-video .elementor-custom-embed-image-overlay:hover .elementor-custom-embed-play i{opacity:1}.elementor-widget-video .elementor-custom-embed-image-overlay img{display:block;width:100%;aspect-ratio:var(--video-aspect-ratio);-o-object-fit:cover;object-fit:cover;-o-object-position:center center;object-position:center center}@supports not (aspect-ratio:1\/1){.elementor-widget-video .elementor-custom-embed-image-overlay{position:relative;overflow:hidden;height:0;padding-bottom:calc(100% \/ var(--video-aspect-ratio))}.elementor-widget-video .elementor-custom-embed-image-overlay img{position:absolute;top:0;right:0;bottom:0;left:0}}.elementor-widget-video .e-hosted-video .elementor-video{-o-object-fit:cover;object-fit:cover}.e-con-inner>.elementor-widget-video,.e-con>.elementor-widget-video{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-ce06a77\" data-id=\"ce06a77\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\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-25d65cf elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"25d65cf\" 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-top-column elementor-element elementor-element-9ce4f30\" data-id=\"9ce4f30\" 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-ea0c546 elementor-widget elementor-widget-heading\" data-id=\"ea0c546\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">- Vid\u00e9o -<br \/><br \/>\u00ab Comment accueillir les personnes sourdes ou malentendantes en milieu m\u00e9dical \u00bb<br \/>(SENSGENE)<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cc135f5 elementor-widget elementor-widget-video\" data-id=\"cc135f5\" data-element_type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/U4eYkM7QZBw&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-c73130f\" data-id=\"c73130f\" 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-0463818 elementor-widget elementor-widget-heading\" data-id=\"0463818\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">- Vid\u00e9o -<br \/><br \/>\u00ab Comment accueillir les personnes aveugles et malvoyantes \u00e0 l\u2019h\u00f4pital \u00bb<br \/>(SENSGENE)<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-506a9d8 elementor-widget elementor-widget-video\" data-id=\"506a9d8\" data-element_type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/TorKg8t9VWQ&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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-6cc42ac elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6cc42ac\" 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-f903297\" data-id=\"f903297\" 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-ab1f4b0 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"ab1f4b0\" 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-5c40524\" data-id=\"5c40524\" 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-f9b2861 elementor-widget elementor-widget-heading\" data-id=\"f9b2861\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">- Vid\u00e9o -<br \/><br \/>\u00ab&nbsp;Mieux accueillir les patients d\u00e9ficients visuels aux urgences&nbsp;\u00bb<br \/>(SENSGENE)<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-428357c elementor-widget elementor-widget-video\" data-id=\"428357c\" data-element_type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/UQECfy3QYXg?list=PLuo654z6gILVpHysk45ynWJ7Xdd5aXVRn&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-59e885c\" data-id=\"59e885c\" 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-eb183de elementor-widget elementor-widget-heading\" data-id=\"eb183de\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">- Vid\u00e9o -<br \/><br \/>\u00ab&nbsp;Mieux accueillir les patients sourds & malentendants aux urgences&nbsp;\u00bb<br \/>(SENSGENE)<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c805d4f elementor-widget elementor-widget-video\" data-id=\"c805d4f\" data-element_type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/eA7cort6dx4?list=PLuo654z6gILVpHysk45ynWJ7Xdd5aXVRn&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Qu\u2019est-ce qu\u2019une maladie rare ? Une maladie est dite \u00ab\u00a0rare\u00a0\u00bb lorsqu\u2019elle touche moins d\u2019une personne sur 2000, selon la d\u00e9finition retenue en Europe. Environ 80% des maladies rares sont d\u2019origine g\u00e9n\u00e9tique\u00a0; il existe aussi des maladies infectieuses rares ainsi que des maladies auto-immunes rares, mais pour un grand nombre de maladies, l\u2019origine demeure inconnue \u00e0 [&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":"Conna\u00eetre les maladies rares","_seopress_titles_desc":"Qu\u2019est-ce qu\u2019une maladie rare ? Une maladie est dite \u00ab rare \u00bb lorsqu\u2019elle touche moins d\u2019une personne sur 2000, selon la d\u00e9finition retenue en Europe. ","_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":"2026-02-21 16:50:56","action":"change-status","newStatus":"draft","terms":[],"taxonomy":""},"_links":{"self":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/259"}],"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=259"}],"version-history":[{"count":194,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/259\/revisions"}],"predecessor-version":[{"id":1592,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/259\/revisions\/1592"}],"wp:attachment":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/media?parent=259"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}