{"id":222,"date":"2024-09-13T08:59:00","date_gmt":"2024-09-13T06:59:00","guid":{"rendered":"https:\/\/remeds.org\/?page_id=222"},"modified":"2025-07-02T15:06:51","modified_gmt":"2025-07-02T13:06:51","slug":"a-propos-de-remeds","status":"publish","type":"page","link":"https:\/\/remeds.org\/fr\/about-remeds\/","title":{"rendered":"\u00c0 propos de REMEDS"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"222\" class=\"elementor elementor-222\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-49a3fe8 e-flex e-con-boxed e-con e-parent\" data-id=\"49a3fe8\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-cd5d78b e-con-full e-flex e-con e-child\" data-id=\"cd5d78b\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-6529737 elementor-widget elementor-widget-heading\" data-id=\"6529737\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Qui est REMEDS ?<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2517e79 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"2517e79\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b1d8a1f e-con-full e-flex e-con e-child\" data-id=\"b1d8a1f\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-b40b553 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"b40b553\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>REMEDS est une initiative de DupMECP2 - Lasst uns MDS heilen, une organisation europ\u00e9enne \u00e0 but non lucratif, d\u00e9di\u00e9e au soutien de la communaut\u00e9 mondiale du syndrome de duplication de MECP2 (MDS). Notre \u00e9quipe REMEDS comprend un m\u00e9decin d\u00e9vou\u00e9, le Dr Gr\u00f6ppel, et d'autres experts du syndrome qui s'engagent \u00e0 faire progresser la recherche et les soins aux patients atteints du syndrome de duplication du g\u00e8ne MECP2.<\/p><p>Avec REMEDS, nous voulons cr\u00e9er une plateforme compl\u00e8te, interactive et multilingue o\u00f9 les donn\u00e9es sont trait\u00e9es avec le plus haut niveau de s\u00e9curit\u00e9 et de confidentialit\u00e9 des donn\u00e9es des patients, avec un stockage conforme au RGPD sur un serveur europ\u00e9en. \u00a0<\/p><p>Notre objectif est d'optimiser la communication et l'\u00e9change d'informations afin d'am\u00e9liorer la compr\u00e9hension de la maladie, de soutenir la recherche sur les traitements et d'apporter un soutien crucial aux familles touch\u00e9es par le syndrome my\u00e9lodysplasique. En r\u00e9unissant les patients, les soignants, les entreprises du secteur de la sant\u00e9 et les chercheurs au sein d'une seule et m\u00eame plateforme, nous favorisons un environnement collaboratif qui am\u00e9liore la compr\u00e9hension et la prise en charge du syndrome de duplication du g\u00e8ne MECP2.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-64626b1 elementor-widget-tablet__width-initial elementor-widget elementor-widget-image\" data-id=\"64626b1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\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 fetchpriority=\"high\" decoding=\"async\" width=\"800\" height=\"534\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-1024x683.jpg\" class=\"attachment-large size-large wp-image-1480\" alt=\"Caroline Covini David Covini et Dr. Gudrun Gr\u00f6ppel\" srcset=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-1024x683.jpg 1024w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-300x200.jpg 300w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-768x512.jpg 768w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-1536x1024.jpg 1536w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-2048x1365.jpg 2048w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">Caroline Covini, David Covini et Dr. Gudrun Gr\u00f6ppel<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\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-9940913 elementor-fixed elementor-widget elementor-widget-image\" data-id=\"9940913\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;_position&quot;:&quot;fixed&quot;}\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"800\" height=\"919\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-891x1024.png\" class=\"attachment-large size-large wp-image-484\" alt=\"\" srcset=\"https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-891x1024.png 891w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-261x300.png 261w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-768x883.png 768w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-1336x1536.png 1336w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-1781x2048.png 1781w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-9148461 e-con-full e-flex e-con e-child\" data-id=\"9148461\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-f1dc344 e-con-full e-flex e-con e-child\" data-id=\"f1dc344\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-b726836 e-con-full e-flex e-con e-child\" data-id=\"b726836\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-e8740cd elementor-widget elementor-widget-image\" data-id=\"e8740cd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/05\/3_What_is_Remeds.svg\" class=\"attachment-full size-full wp-image-2881\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e87d59f elementor-widget elementor-widget-heading\" data-id=\"e87d59f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Qu'est-ce que REMEDS ?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-57a1b68 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"57a1b68\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f343b06 elementor-widget elementor-widget-text-editor\" data-id=\"f343b06\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>REMEDS est l'acronyme de REgister and Medical Survey for MECP2 Duplication Syndrome (registre et enqu\u00eate m\u00e9dicale sur le syndrome de duplication du g\u00e8ne MECP2). Il s'agit d'un registre mondial con\u00e7u pour collecter et g\u00e9rer les donn\u00e9es de la communaut\u00e9 MDS. Cette plateforme innovante permet d'enregistrer et d'interroger exclusivement les patients atteints du syndrome de duplication du g\u00e8ne MECP2. En recueillant des informations pr\u00e9cieuses directement aupr\u00e8s des soignants par le biais d'enqu\u00eates, REMEDS vise \u00e0 mieux comprendre la maladie, son incidence r\u00e9elle et son \u00e9volution. La plateforme permet \u00e9galement un \u00e9change direct entre les patients, les soignants et les chercheurs, favorisant ainsi une communaut\u00e9 solidaire et inform\u00e9e.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-0e75d6a e-con-full e-flex e-con e-child\" data-id=\"0e75d6a\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-0b19773 e-con-full e-flex e-con e-child\" data-id=\"0b19773\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-7fa74ef elementor-widget elementor-widget-image\" data-id=\"7fa74ef\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/05\/2_Surveys_Remeds.svg\" class=\"attachment-full size-full wp-image-2880\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9c8b9c3 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"9c8b9c3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default translation-block\">Pourquoi des enqu\u00eates et un registre de patients ?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7cecfdf elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"7cecfdf\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5e75f4f elementor-widget elementor-widget-text-editor\" data-id=\"5e75f4f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Les enqu\u00eates et le registre des patients sont des \u00e9l\u00e9ments essentiels de REMEDS.<\/p><p>Un registre des patients est une base de donn\u00e9es s\u00e9curis\u00e9e dans laquelle les patients atteints d'une maladie sp\u00e9cifique peuvent s'inscrire et partager des informations d\u00e9taill\u00e9es telles que les donn\u00e9es d\u00e9mographiques, les informations g\u00e9n\u00e9tiques et les ant\u00e9c\u00e9dents m\u00e9dicaux. Ce registre permet de suivre l'incidence et la progression du syndrome de duplication du g\u00e8ne MECP2 au niveau mondial, ce qui permet de mieux comprendre la maladie.<\/p><p>Les enqu\u00eates sont con\u00e7ues pour recueillir des informations d\u00e9taill\u00e9es aupr\u00e8s des patients, des soignants et des professionnels de la sant\u00e9 sur leur exp\u00e9rience du syndrome de duplication du g\u00e8ne MECP2. Les enqu\u00eates permettent de tenir le registre \u00e0 jour, tout en fournissant aux chercheurs et aux companies pharmaceutiques une vue d'ensemble de la maladie, ce qui permet d'am\u00e9liorer les traitements et les strat\u00e9gies de prise en charge.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-17762e0 e-con-full e-flex e-con e-child\" data-id=\"17762e0\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-542e4ba e-con-full e-flex e-con e-child\" data-id=\"542e4ba\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-22599ac elementor-widget elementor-widget-image\" data-id=\"22599ac\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/05\/1_Why-joining_Remeds.svg\" class=\"attachment-full size-full wp-image-2879\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a7e9899 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"a7e9899\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Pourquoi rejoindre REMEDS ?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-07aedfe elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"07aedfe\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5b044a2 elementor-widget elementor-widget-text-editor\" data-id=\"5b044a2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p class=\"translation-block\">En participant, vous contribuez \u00e0 am\u00e9liorer la compr\u00e9hension et le traitement du syndrome de duplication de du g\u00e8ne MECP2. Votre implication permet d'acc\u00e9l\u00e9rer le d\u00e9veloppement de nouvelles th\u00e9rapies et d'am\u00e9liorer la qualit\u00e9 des soins pour tous les enfants affect\u00e9s. En outre, vous avez acc\u00e8s \u00e0 une communaut\u00e9 de soutien et vous restez inform\u00e9 des derni\u00e8res avanc\u00e9es scientifiques et des r\u00e9sultats de la recherche. En partageant vos exp\u00e9riences et vos donn\u00e9es, vous jouez un r\u00f4le crucial dans l'\u00e9laboration de l'avenir de la recherche m\u00e9dicale et des soins aux patients atteints du syndrome de duplication du g\u00e8ne MECP2.<\/p>\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\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-e1eae78 e-flex e-con-boxed e-con e-parent\" data-id=\"e1eae78\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-ad48623 e-flex e-con-boxed e-con e-child\" data-id=\"ad48623\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-ec56c6e elementor-widget elementor-widget-heading\" data-id=\"ec56c6e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Comment fonctionne REMEDS ?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-40191e4 elementor-widget elementor-widget-text-editor\" data-id=\"40191e4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Chaque demande d'enregistrement est examin\u00e9e et valid\u00e9e par un m\u00e9decin de REMEDS, qui s'assure que tous les patients sont atteints du syndrome de duplication du g\u00e8ne MECP2. Une fois le diagnostic confirm\u00e9 par notre m\u00e9decin, les aidants re\u00e7oivent des notifications sur les actualit\u00e9s scientifiques et sont invit\u00e9s \u00e0 participer \u00e0 des enqu\u00eates con\u00e7ues par des soci\u00e9t\u00e9s pharmaceutiques, des scientifiques et des professionnels de la sant\u00e9.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b45c0f4 e-con-full e-flex e-con e-child\" data-id=\"b45c0f4\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-4f3bffa e-con-full e-grid e-con e-child\" data-id=\"4f3bffa\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-dff8bb7 e-con-full e-flex e-con e-child\" data-id=\"dff8bb7\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-8d6e723 elementor-widget elementor-widget-heading\" data-id=\"8d6e723\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">01<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4e0b603 elementor-widget elementor-widget-heading\" data-id=\"4e0b603\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Cr\u00e9er un compte<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2aed89d elementor-widget elementor-widget-text-editor\" data-id=\"2aed89d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Se connecter \u00e0 un espace priv\u00e9 \u00e0 l'aide d'outils d'authentification multifactorielle.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-7a5ab43 e-con-full e-flex e-con e-child\" data-id=\"7a5ab43\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4717bc2 elementor-widget elementor-widget-heading\" data-id=\"4717bc2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">02<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-16bcce5 elementor-widget elementor-widget-heading\" data-id=\"16bcce5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Enregistrer un patient\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4fc5d83 elementor-widget elementor-widget-text-editor\" data-id=\"4fc5d83\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<div id=\"brxe-uymlbq\" class=\"brxe-block\">\n<p>Fournir des informations d\u00e9taill\u00e9es sur le patient et joindre une preuve de diagnostic, pour validation par le m\u00e9decin de REMEDS.<\/p>\n<\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-01bd2ab e-con-full e-flex e-con e-child\" data-id=\"01bd2ab\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-670d4e5 elementor-widget elementor-widget-heading\" data-id=\"670d4e5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">03<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c8991d5 elementor-widget elementor-widget-heading\" data-id=\"c8991d5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Inscription r\u00e9ussie \u00a0<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5c1d4be elementor-widget elementor-widget-text-editor\" data-id=\"5c1d4be\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<div id=\"brxe-pumhlk\" class=\"brxe-block\"><p>Une fois valid\u00e9e, acc\u00e9dez \u00e0 la plateforme et g\u00e9rez les informations relatives \u00e0 vos patients.<\/p><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-635f4be e-con-full e-flex e-con e-child\" data-id=\"635f4be\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-7eb8428 elementor-widget elementor-widget-heading\" data-id=\"7eb8428\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">04<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e1aca5f elementor-widget elementor-widget-heading\" data-id=\"e1aca5f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Commencer <\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2a9df16 elementor-widget elementor-widget-text-editor\" data-id=\"2a9df16\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<section id=\"brxe-ixcyed\" class=\"brxe-section\"><div id=\"brxe-tcderi\" class=\"brxe-container brx-grid\"><div id=\"brxe-sypfqn\" class=\"brxe-block\"><p>Acc\u00e9dez et participez \u00e0 des enqu\u00eates, consultez votre historique et contribuez aux efforts de recherche en cours.<\/p><\/div><\/div><\/section>\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>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-212fa9e e-con-full e-flex e-con e-parent\" data-id=\"212fa9e\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-1400ab0 e-con-full e-flex e-con e-child\" data-id=\"1400ab0\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-2fffc6a elementor-widget elementor-widget-heading\" data-id=\"2fffc6a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Vous avez un diagnostic de syndrome de duplication du g\u00e8ne MECP2 ?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6b0412a elementor-widget elementor-widget-jet-engine-component-400\" data-id=\"6b0412a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"jet-engine-component-400.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<style>.elementor-400 .elementor-element.elementor-element-6b9166f{--display:flex;--flex-direction:row;--container-widget-width:calc( ( 1 - var( --container-widget-flex-grow ) ) * 100% );--container-widget-height:100%;--container-widget-flex-grow:1;--container-widget-align-self:stretch;--flex-wrap-mobile:wrap;--justify-content:flex-start;--align-items:center;--border-radius:36px 36px 36px 36px;--margin-top:0px;--margin-bottom:0px;--margin-left:0px;--margin-right:0px;--padding-top:10px;--padding-bottom:12px;--padding-left:13px;--padding-right:13px;}.elementor-400 .elementor-element.elementor-element-6b9166f:not(.elementor-motion-effects-element-type-background), .elementor-400 .elementor-element.elementor-element-6b9166f > .elementor-motion-effects-container > .elementor-motion-effects-layer{background-color:var( --e-global-color-9b83194 );}.elementor-400 .elementor-element.elementor-element-6b9166f.e-con{--align-self:flex-start;--order:-99999 \/* order start hack *\/;}.elementor-widget-heading .elementor-heading-title{font-family:var( --e-global-typography-primary-font-family ), Sans-serif;font-weight:var( --e-global-typography-primary-font-weight );color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-c258b9a .elementor-heading-title{font-family:\"Mulish\", Sans-serif;font-size:1.2rem;font-weight:600;color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-c0331a6{--display:flex;--flex-direction:row;--container-widget-width:initial;--container-widget-height:100%;--container-widget-flex-grow:1;--container-widget-align-self:stretch;--flex-wrap-mobile:wrap;--margin-top:-4px;--margin-bottom:0px;--margin-left:0px;--margin-right:0px;}.elementor-widget-icon.elementor-view-stacked .elementor-icon{background-color:var( --e-global-color-primary );}.elementor-widget-icon.elementor-view-framed .elementor-icon, .elementor-widget-icon.elementor-view-default .elementor-icon{color:var( --e-global-color-primary );border-color:var( --e-global-color-primary );}.elementor-widget-icon.elementor-view-framed .elementor-icon, .elementor-widget-icon.elementor-view-default .elementor-icon svg{fill:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24 .elementor-icon-wrapper{text-align:center;}.elementor-400 .elementor-element.elementor-element-150af24.elementor-view-stacked .elementor-icon{background-color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24.elementor-view-framed .elementor-icon, .elementor-400 .elementor-element.elementor-element-150af24.elementor-view-default .elementor-icon{color:var( --e-global-color-primary );border-color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24.elementor-view-framed .elementor-icon, .elementor-400 .elementor-element.elementor-element-150af24.elementor-view-default .elementor-icon svg{fill:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24 .elementor-icon{font-size:30px;}.elementor-400 .elementor-element.elementor-element-150af24 .elementor-icon svg{height:30px;}.elementor-400 .elementor-element.elementor-element-150af24{margin:0px 0px calc(var(--kit-widget-spacing, 0px) + -5px) -5px;top:-1px;}body:not(.rtl) .elementor-400 .elementor-element.elementor-element-150af24{left:0px;}body.rtl .elementor-400 .elementor-element.elementor-element-150af24{right:0px;}.elementor-400 .elementor-element.elementor-element-fd98fa4 .elementor-icon-wrapper{text-align:center;}.elementor-400 .elementor-element.elementor-element-fd98fa4 .elementor-icon{font-size:14px;}.elementor-400 .elementor-element.elementor-element-fd98fa4 .elementor-icon svg{height:14px;}.elementor-400 .elementor-element.elementor-element-fd98fa4{margin:0px 0px calc(var(--kit-widget-spacing, 0px) + 0px) -4px;top:4px;}body:not(.rtl) .elementor-400 .elementor-element.elementor-element-fd98fa4{left:8px;}body.rtl .elementor-400 .elementor-element.elementor-element-fd98fa4{right:8px;}@media(min-width:768px){.elementor-400 .elementor-element.elementor-element-c0331a6{--width:auto;}}@media(max-width:767px){.elementor-400 .elementor-element.elementor-element-6b9166f{--width:auto;--align-items:flex-start;--container-widget-width:calc( ( 1 - var( --container-widget-flex-grow ) ) * 100% );--flex-wrap:nowrap;}.elementor-400 .elementor-element.elementor-element-c258b9a{width:var( --container-widget-width, 439px );max-width:439px;--container-widget-width:439px;--container-widget-flex-grow:0;}.elementor-400 .elementor-element.elementor-element-c0331a6{--width:20px;}}\/* Start custom CSS for container, class: .elementor-element-6b9166f *\/.button-main{rn  rn  transition: transform 0.3s ease;rn  rn}rnrn.button-main:hover .icon-btn-bg {rn        transform: translate( -1px , 0 ) rotate(180deg);rn        transform-origin: center;rn   ttttransition: transform 0.4s ease;rn    }rnrn.button-main:hover .button-main-text{rn  text-decoration: underline #ffffff65;rn  rn}rn.icon-btn-bg {rn  rn  transition: transform 0.6s ease;rn  rn}\/* End custom CSS *\/\n\/* Start Custom Fonts CSS *\/@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: normal;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-regular.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: italic;\n\tfont-weight: normal;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-italic.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: 600;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-600.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: italic;\n\tfont-weight: 600;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-600italic.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: 700;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-700.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: 500;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-500.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: italic;\n\tfont-weight: 700;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-700italic.woff2') format('woff2');\n}\n\/* End Custom Fonts CSS *\/<\/style>\t\t<div data-elementor-type=\"jet-engine-component\" data-elementor-id=\"400\" class=\"elementor elementor-400 jet-listing-grid--400 jet-component-instance-4858\" data-elementor-post-type=\"jet-engine\" style=\"\">\n\t\t\t\t<a class=\"elementor-element elementor-element-6b9166f e-con-full button-main e-flex e-con e-child\" data-id=\"6b9166f\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\" href=\"https:\/\/remeds.org\/fr\/account\/patients\/\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c258b9a elementor-widget-mobile__width-initial elementor-widget elementor-widget-heading\" data-id=\"c258b9a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Enregistrer un patient<\/h2>\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-c0331a6 e-con-full e-flex e-con e-child\" data-id=\"c0331a6\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-150af24 elementor-absolute icon-btn-bg elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"150af24\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;_position&quot;:&quot;absolute&quot;}\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xmlns:serif=\"http:\/\/www.serif.com\/\" width=\"100%\" height=\"100%\" viewbox=\"0 0 29 28\" xml:space=\"preserve\" style=\"fill-rule:evenodd;clip-rule:evenodd;stroke-linejoin:round;stroke-miterlimit:2;\"> <g transform=\"matrix(1,0,0,1,-946,-526.35)\"> <g transform=\"matrix(1,0,0,1,946,526)\"> <path d=\"M27.756,12.484C28.491,15.695 27.556,19.032 25.053,21.876C22.588,24.691 18.556,27.014 14,27.534C9.444,28.085 5.412,26.631 2.947,23.902C0.444,21.191 -0.491,17.205 0.244,13.092C0.981,8.957 3.094,5.509 5.562,3.293C8.067,1.061 10.926,0.059 14,0.423C17.074,0.793 19.933,2.361 22.438,4.461C24.906,6.59 27.018,9.252 27.756,12.484L27.756,12.484Z\" style=\"fill:white;fill-rule:nonzero;\"><\/path> <\/g> <\/g> <\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fd98fa4 elementor-absolute elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"fd98fa4\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;_position&quot;:&quot;absolute&quot;}\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xmlns:serif=\"http:\/\/www.serif.com\/\" width=\"100%\" height=\"100%\" viewbox=\"0 0 5 8\" xml:space=\"preserve\" style=\"fill-rule:evenodd;clip-rule:evenodd;stroke-linecap:round;stroke-linejoin:round;\"> <g transform=\"matrix(1,0,0,1,-958.3,-535.85)\"> <g transform=\"matrix(1,0,0,1,946,526)\"> <path d=\"M13.3,10.85L16.1,13.65L13.3,16.45\" style=\"fill:none;fill-rule:nonzero;stroke:rgb(24,37,52);stroke-width:2px;\"><\/path> <\/g> <\/g> <\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Who is REMEDS? REMEDS is an initiative by DupMECP2 \u2013 Lasst uns MDS heilen, a European based non-profit organization, dedicated to supporting the global MECP2 Duplication Syndrome (MDS) community. Our REMEDS team includes a dedicated medical doctor, Dr. Gr\u00f6ppel, and other MDS experts committed to advancing research and patient care for MECP2 duplication syndrome. With [&hellip;]<\/p>\n","protected":false},"author":73,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_jf_save_progress":"","footnotes":""},"class_list":["post-222","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/pages\/222","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/users\/73"}],"replies":[{"embeddable":true,"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/comments?post=222"}],"version-history":[{"count":10,"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/pages\/222\/revisions"}],"predecessor-version":[{"id":3364,"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/pages\/222\/revisions\/3364"}],"wp:attachment":[{"href":"https:\/\/remeds.org\/fr\/wp-json\/wp\/v2\/media?parent=222"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}