{"id":11972,"date":"2022-01-30T13:46:11","date_gmt":"2022-01-30T12:46:11","guid":{"rendered":"https:\/\/www.cutislaxa.org\/6th-cutis-laxa-days\/"},"modified":"2023-02-06T15:02:49","modified_gmt":"2023-02-06T14:02:49","slug":"6emes-journees-de-la-cutis-laxa","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/fr\/6emes-journees-de-la-cutis-laxa\/","title":{"rendered":"6\u00e8mes JOURNEES DE LA CUTIS LAXA"},"content":{"rendered":"<div id='av_section_1'  class='avia-section main_color avia-section-default avia-no-border-styling  avia-full-stretch av-section-color-overlay-active avia-bg-style-scroll  avia-builder-el-0  el_before_av_section  avia-builder-el-first   container_wrap fullsize' style='background-color: #f5f5f2; background-repeat: no-repeat; background-image: url(https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/01\/Schermafbeelding-2022-01-30-om-13.27.41-e1643551626198.png);background-attachment: scroll; background-position: center center;  '  data-section-bg-repeat='stretch'><div class='av-section-color-overlay-wrap'><div class='av-section-color-overlay' style='opacity: 0.9; background-color: #e8e8e8; '><\/div><div class='container' ><main  role=\"main\" itemprop=\"mainContentOfPage\"  class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-11972'><div class='entry-content-wrapper clearfix'>\n<div class=\"flex_column av_one_full  flex_column_div av-zero-column-padding first  avia-builder-el-1  el_before_av_one_fifth  avia-builder-el-first  \" style='border-radius:0px; '><div  style='padding-bottom:10px; font-size:70px;' class='av-special-heading av-special-heading-h1  blockquote modern-quote modern-centered  avia-builder-el-2  avia-builder-el-no-sibling  av-inherit-size '><h1 class='av-special-heading-tag '  itemprop=\"headline\"  ><b>6\u00e8mes JOURNEES DE LA CUTIS LAXA<\/b><\/h1><div class ='av-subheading av-subheading_below  ' style='font-size:30px;'><p>Du 13 au 16 Septembre 2022<\/p>\n<\/div><div class='special-heading-border'><div class='special-heading-inner-border' ><\/div><\/div><\/div><\/div><div class=\"flex_column av_one_fifth  flex_column_div av-zero-column-padding first  avia-builder-el-3  el_after_av_one_full  el_before_av_three_fifth  column-top-margin\" style='border-radius:0px; '><\/div><div class=\"flex_column av_three_fifth  flex_column_div   avia-builder-el-4  el_after_av_one_fifth  el_before_av_one_fifth  column-top-margin\" style='background: #ffffff; padding:20px; background-color:#ffffff; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  av_inherit_color '  style='font-size:16px; color:#2451d8; '  itemprop=\"text\" ><h3 style=\"text-align: center;\">13<strong> et 14 Septembre<\/strong><br \/>\n<strong> Journ\u00e9e CLINIQUE au Centre de G\u00e9n\u00e9tique M\u00e9dicale<\/strong><br \/>\n<strong> de l&rsquo;H\u00d4PITAL UNIVERSITAIRE DE GAND<\/strong><\/h3>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/13-et-14-septembre-journee-medicale\/\"><span style=\"color: #ff0000;\">(Cliquer ici pour voir le compte-rendu et les photos)<\/span><\/a><\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11643 aligncenter\" src=\"..\/wp-content\/uploads\/2022\/01\/UZGent-bannerbeeld-300x150.jpg\" alt=\"\" width=\"300\" height=\"150\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/01\/UZGent-bannerbeeld-300x150.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/01\/UZGent-bannerbeeld-1030x515.jpg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/01\/UZGent-bannerbeeld-768x384.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/01\/UZGent-bannerbeeld-705x353.jpg 705w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/01\/UZGent-bannerbeeld.jpg 1200w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<\/div><\/section><\/div><div class=\"flex_column av_one_fifth  flex_column_div av-zero-column-padding   avia-builder-el-6  el_after_av_three_fifth  avia-builder-el-last  column-top-margin\" style='border-radius:0px; '><\/div>\n\n<\/div><\/div><\/main><!-- close content main element --><\/div><\/div><\/div><div id='av_section_2'  class='avia-section main_color avia-section-default avia-no-border-styling  avia-bg-style-scroll  avia-builder-el-7  el_after_av_section  el_before_av_section   container_wrap fullsize' style=' '  ><div class='container' ><div class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-11972'><div class='entry-content-wrapper clearfix'>\n<div class='flex_column_table av-equal-height-column-flextable -flextable' ><div class=\"flex_column av_one_fifth  no_margin flex_column_table_cell av-equal-height-column av-align-top av-zero-column-padding first  avia-builder-el-8  el_before_av_three_fifth  avia-builder-el-first  \" style='border-radius:0px; '><\/div><div class=\"flex_column av_three_fifth  no_margin flex_column_table_cell av-equal-height-column av-align-top av-zero-column-padding   avia-builder-el-9  el_after_av_one_fifth  el_before_av_one_fifth  \" style='border-radius:0px; '><p><div  class='avia-image-container  av-styling-    avia-builder-el-10  el_before_av_textblock  avia-builder-el-first  avia-align-center '  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\"  ><div class='avia-image-container-inner'><div class='avia-image-overlay-wrap'><img decoding=\"async\" class='wp-image-14340 avia-img-lazy-loading-not-14340 avia_image' src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/group-ghent-.jpg\" alt='' title='group ghent-' height=\"393\" width=\"1500\"  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/group-ghent-.jpg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/group-ghent--300x79.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/group-ghent--1030x270.jpg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/group-ghent--768x201.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/group-ghent--705x185.jpg 705w\" sizes=\"(max-width: 1500px) 100vw, 1500px\" \/><\/div><\/div><\/div><br \/>\n<section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:14px; '  itemprop=\"text\" ><h3>Quel bonheur de vous retrouver tous, en particulier apr\u00e8s les ann\u00e9es de Covid qui nous ont tenus \u00e9loign\u00e9s les uns des autres.<\/h3>\n<p>Ces 6\u00e8mes Journ\u00e9es de la Cutis Laxa ont \u00e9t\u00e9 un grand succ\u00e8s\u00a0!!<\/p>\n<p>C\u2019est la premi\u00e8re fois qu\u2019autant de malades (23) \u00e9taient r\u00e9unis,<br \/>\nLa premi\u00e8re fois qu\u2019autant de pays (11) \u00e9taient repr\u00e9sent\u00e9s.<br \/>\nLa premi\u00e8re fois aussi que la conf\u00e9rence r\u00e9unissait autant de m\u00e9decins et chercheurs int\u00e9ress\u00e9s par la Cutis Laxa.<\/p>\n<p>C\u2019est toujours tr\u00e8s difficile de rendre compte avec le plus d\u2019exactitude possible de ce qu\u2019il s\u2019est pass\u00e9 durant 4 journ\u00e9es, surtout lorsqu\u2019elles ont \u00e9t\u00e9 aussi intenses\u00a0: Beaucoup de moments forts en \u00e9motions, beaucoup d\u2019informations, beaucoup de joie, beaucoup de rires, mais de tristesse aussi \u2026\u2026\u2026<\/p>\n<p>Les photos parlent d\u2019elles-m\u00eames, c\u2019est \u00e7a les journ\u00e9es Cutis Laxa<\/p>\n<p>Marie-Claude Boiteux, Pr\u00e9sidente<\/p>\n<\/div><\/section><\/p><\/div><div class=\"flex_column av_one_fifth  no_margin flex_column_table_cell av-equal-height-column av-align-top av-zero-column-padding   avia-builder-el-12  el_after_av_three_fifth  avia-builder-el-last  \" style='border-radius:0px; '><\/div><\/div><!--close column table wrapper. Autoclose: 1 -->\n\n<\/div><\/div><\/div><!-- close content main div --><\/div><\/div><div id='av_section_3'  class='avia-section main_color avia-section-default avia-no-border-styling  avia-bg-style-scroll  avia-builder-el-13  el_after_av_section  el_before_av_section   container_wrap fullsize' style='background-color: #f5f5f2;  '  ><div class='container' ><div class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-11972'><div class='entry-content-wrapper clearfix'>\n<div class='flex_column_table av-equal-height-column-flextable -flextable' ><div class=\"flex_column av_one_full  no_margin flex_column_table_cell av-equal-height-column av-align-top av-zero-column-padding first  avia-builder-el-14  el_before_av_one_half  avia-builder-el-first  \" style='border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '   itemprop=\"text\" ><h3>SYMPOSIUM ET COLLABORATION EN RECHERCHE<\/h3>\n<p>Dans les magnifiques b\u00e2timents historiques de l\u2019Universit\u00e9 de Gand, les participants \u00e0 la conf\u00e9rence ont \u00e9t\u00e9 plus nombreux que jamais auparavant. Gr\u00e2ce aux financements obtenus de l\u2019Universit\u00e9 de Gand , de EADV, de ERN-Skin, de FWO et du programme Europ\u00e9en EJPRD, il a \u00e9t\u00e9 possible d\u2019organiser ce symposium.<\/p>\n<p>C\u2019\u00e9tait tr\u00e8s \u00e9mouvant de voir une salle aussi pleine\u00a0!<\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-13890 alignleft\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02611-2-259x300.jpeg\" alt=\"\" width=\"86\" height=\"100\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02611-2-259x300.jpeg 259w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02611-2.jpeg 558w\" sizes=\"auto, (max-width: 86px) 100vw, 86px\" \/><\/p>\n<p>Anim\u00e9 par Paul De Brem, journaliste scientifique, fid\u00e8le \u00e0 nos c\u00f4t\u00e9s depuis les journ\u00e9es d\u2019Annecy, cet \u00e9v\u00e8nement a permis aux chercheurs et professionnels de sant\u00e9 venus d\u2019Europe, de Turquie et des USA de partager avec nous les informations les plus r\u00e9centes sur la Cutis Laxa.<\/p>\n<p><a href=\"https:\/\/www.cutislaxa.org\/resultats-f\/\">R\u00e9sultats de l&rsquo;enqu\u00eate de satisfaction<\/a><\/p>\n<\/div><\/section><\/div><\/div><!--close column table wrapper. Autoclose: 1 --><div class='flex_column_table av-equal-height-column-flextable -flextable' ><div class=\"flex_column av_one_half  flex_column_table_cell av-equal-height-column av-align-top first  avia-builder-el-16  el_after_av_one_full  el_before_av_one_half  column-top-margin\" style='background: rgba(255,255,255,0.77); border-width:1px; border-style:solid; padding:15px; background-color:rgba(255,255,255,0.77); border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h4 style=\"text-align: center;\"><strong>Jeudi 15 Septembre 2022<\/strong><\/h4>\n<hr \/>\n<p style=\"text-align: center;\"><strong>Conf\u00e9rence Symposium<\/strong><\/p>\n<p style=\"text-align: center;\"><span style=\"color: #ff0000;\"><em>(pour voir les r\u00e9sum\u00e9s des pr\u00e9sentations, cliquer sur leurs titres)<\/em><\/span><\/p>\n<\/div><\/section><br \/>\n<div  class='avia-image-container  av-styling-    avia-builder-el-18  el_after_av_textblock  el_before_av_textblock  avia-align-center '  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\"  ><div class='avia-image-container-inner'><div class='avia-image-overlay-wrap'><img decoding=\"async\" class='wp-image-14352 avia-img-lazy-loading-not-14352 avia_image' src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02412-964px.jpg\" alt='' title='DSC02412-964px' height=\"229\" width=\"964\"  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02412-964px.jpg 964w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02412-964px-300x71.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02412-964px-768x182.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02412-964px-705x167.jpg 705w\" sizes=\"(max-width: 964px) 100vw, 964px\" \/><\/div><\/div><\/div><br \/>\n<section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h3>SESSION I: Diagnostic et prise en charge\u00a0 globale des Cutis Laxa<\/h3>\n<ul>\n<li>Prof. Dr. Bert Callewaert, MD, (Gand, Belgique): <a href=\"https:\/\/www.cutislaxa.org\/202209-prof-dr-bert-callewaert_cl-classification-and-guidelines\/\">Classification des types de CL et Protocoles de prise en charge\u00a0<\/a><\/li>\n<li>Dr. Laura Mui\u00f1o Mosquera, MD, (Gand, Belgique): <a href=\"https:\/\/www.cutislaxa.org\/202209-dr-laura-muino-mosquera_cardiovascular-follow-up\/\">Suivi Cardiovasculaire des CL<\/a><\/li>\n<li>Mme Klara Farkas, MD (Budapest, Hongrie) : <a href=\"https:\/\/www.cutislaxa.org\/202209-mrs-klara-farkas_novel-skin-imaging-techniques\/\">Applications potentielles et int\u00e9r\u00eat des nouvelles techniques d&rsquo;imagerie de la peau dans les maladies du tissu conjonctif<\/a><\/li>\n<li>Prof. Dr. Christine Bodemer, MD, (Paris, France): <a href=\"https:\/\/www.cutislaxa.org\/202209-prof-dr-christine-bodemer_embedding-cl-in-ern-skin-ern-ithaca\/\">Inclusion de la\u00a0 CL dans ERN Skin &amp; ERN-Ithaca<\/a><\/li>\n<\/ul>\n<h3>SESSION II: Physiopathologie et derni\u00e8res d\u00e9couvertes dans les diff\u00e9rents types de CL<\/h3>\n<ul>\n<li>Prof. Gerhard. Sengle (Cologne, Allemagne): <a href=\"https:\/\/www.cutislaxa.org\/202209-prof-gerhard-sengle_matrix-biology-animal-modelling\/\">Biologie de la Matrice \u2013 Que pouvons-nous apprendre gr\u00e2ce aux mod\u00e8les animaux?<\/a><\/li>\n<li>Mme. Aude Beyens, MD, (Gand, Belgique): <a href=\"https:\/\/www.cutislaxa.org\/202209-mrs-aude-beyens_defects-of-connective-tissue-proteins-and-cl\/\">D\u00e9fauts structurels des prot\u00e9ines du tissu conjonctif et CL\u00a0\u00a0<\/a><\/li>\n<li>Prof. Uwe Kornak, MD, (G\u00f6ttingen, Allemagne): <a href=\"https:\/\/www.cutislaxa.org\/202209-prof-dr-uwe-kornak_the-secretory-pathway-glycosylation-and-cutis-laxa\/\">La voie Secr\u00e9toire, Glycosylation et Cutis Laxa<\/a><\/li>\n<\/ul>\n<h3>SESSION III: Physiopathologie et derni\u00e8res d\u00e9couvertes dans les diff\u00e9rents types de CL (suite)<\/h3>\n<ul>\n<li>Dr. Thatjana Gardeitchik (Nijmegen, Pays-Bas): <a href=\"https:\/\/www.cutislaxa.org\/202209-dr-thatjana-gardeitchik_neurometabolic-defects-in-cl\/\">D\u00e9fauts neurom\u00e9taboliques dans la Cutis Laxa<\/a><\/li>\n<li>Dr. Bj\u00f6rn Fischer-Zirnsak (Berlin, Allemagne): <a href=\"https:\/\/www.cutislaxa.org\/202209-dr-bjorn-fischer-zirnsak_the-mitonchondrion-and-cl\/\">Mitrochondries et Cutis Laxa<\/a><\/li>\n<\/ul>\n<h3>SESSION IV: Organisation de la Prise en Charge<\/h3>\n<ul>\n<li>Prof. Dr. Zsolt Urban (Pittsburgh) : <a href=\"https:\/\/www.cutislaxa.org\/202209-prof-dr-zsolt-urban-pittsburgh-usa-american-cutis-laxa-clinics\/\">Recherches am\u00e9ricaines sur la Cutis Laxa<\/a><\/li>\n<li>Mme Marie-Claude Boiteux (Pr\u00e9sidente de Cutis laxa Internationale): <a href=\"https:\/\/www.cutislaxa.org\/202209-mrs-marie-claude-boiteux-patients-and-caregivers-perspectives\/\">Perspectives des Patients et des Accompagnants:\u00a0 Le parcours des patients<\/a><\/li>\n<li>Mme Elif Yilmaz MD (Istanbul, Turkey) : <a href=\"https:\/\/www.cutislaxa.org\/202209-mrs-elif-yilmaz-gulec_cutis-laxa-in-turkey\/\">La Cutis Laxa en Turquie : D\u00e9fis\u00a0\u00a0 Opportunit\u00e9s et Collaborations\u00a0\u00a0<\/a><\/li>\n<li>Dr. Karolien Aelbrecht (Gand, Belgique): <a href=\"https:\/\/www.cutislaxa.org\/202209-dr-karolien-aelbrecht_patient-participation\/\">La Participation des Patients\u00a0: Incontournable\u00a0!<\/a><\/li>\n<\/ul>\n<\/div><\/section><\/p><\/div><div class='av-flex-placeholder'><\/div><div class=\"flex_column av_one_half  flex_column_table_cell av-equal-height-column av-align-top   avia-builder-el-20  el_after_av_one_half  avia-builder-el-last  column-top-margin\" style='background: #ffffff; border-width:1px; border-style:solid; padding:15px; background-color:#ffffff; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h4 style=\"text-align: center;\"><strong>Vendredi 16 Septembre 2022<\/strong><\/h4>\n<hr \/>\n<p style=\"text-align: center;\"><strong>COLLABORATION EN RECHERCHE<br \/>\n<\/strong><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/16-septembre-2022-collaboration-en-recherche\/\"><span style=\"color: #ff0000;\">(Cliquer ici pour voir le compte-rendu et les photos)<\/span><\/a><\/p>\n<\/div><\/section><br \/>\n<div  class='avia-image-container  av-styling-    avia-builder-el-22  el_after_av_textblock  el_before_av_textblock  avia-align-center '  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\"  ><div class='avia-image-container-inner'><div class='avia-image-overlay-wrap'><img decoding=\"async\" class='wp-image-12679 avia-img-lazy-loading-not-12679 avia_image' src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/Collaboration-Recherche.jpg\" alt='' title='Collaboration Recherche' height=\"229\" width=\"964\"  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/Collaboration-Recherche.jpg 964w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/Collaboration-Recherche-300x71.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/Collaboration-Recherche-768x182.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/Collaboration-Recherche-705x167.jpg 705w\" sizes=\"(max-width: 964px) 100vw, 964px\" \/><\/div><\/div><\/div><br \/>\n<section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h3>OUVERTURE DE LA JOURN\u00c9E DE COLLABORATION EN RECHERCHE<\/h3>\n<p><strong>Prof. dr. Bert Callewaert: Objectifs de cette journ\u00e9e de collaboration<\/strong><\/p>\n<ul>\n<li>Le paysage des recherches actuelles sur la cutis laxa<\/li>\n<li>D\u00e9fis de la recherche dans les maladies extr\u00eamement rares<\/li>\n<li>Impulser la collaboration (internationale) pour les recherches sur la cutis laxa<\/li>\n<li>Inclure la perspective des patients dans les recherches sur la cutis laxa<\/li>\n<li>D\u00e9finir les objectifs de la recherch\u00e9 sur la Cutis Laxa \u00e0 court et plus long terme.<\/li>\n<li>Obtenir des financements dans un contexte international<\/li>\n<\/ul>\n<h3>Groupe de Travail \u201cCLINIQUE &amp; RECHERCHE\u201d<\/h3>\n<ul>\n<li>Inventaire de l\u2019expertise disponible<\/li>\n<li>Inventaire des projets de recherch\u00e9 en cours : Partage des connaissances<\/li>\n<li>Mise en place d\u2019un groupe de travail et des protocoles de travail en mati\u00e8re de nosologie et de bonnes pratique<\/li>\n<li>Mise en place d\u2019un groupe \u00ab ad hoc \u00bb sp\u00e9cifique pour la prise en charge clinique<\/li>\n<li>Interop\u00e9rabilit\u00e9 entre bases de donn\u00e9es locales et biobanques<\/li>\n<li>Red\u00e9finir les initiatives internationales telles que Genematcher et Variantmatcher sous un m\u00eame th\u00e8me sp\u00e9cifique \u00e0 la maladie<\/li>\n<li>Identifier les futures collaborations de recherche<\/li>\n<li>Planifier l\u2019obtention de financements (r\u00e9seaux innovants de formation, recherchesinterdisciplinaires (cost actions), \u2026)<\/li>\n<\/ul>\n<h3>Groupe de Travail \u201cCOMITE CONSULTATIF DES PATIENTS \u00bb<\/h3>\n<ul>\n<li>Identifier les fardeaux principaux de la maladie<\/li>\n<li>Identifier et formuler les besoins futurs en mati\u00e8re de recherche et de prise en charge.<\/li>\n<li>Identifier les points clefs de la participation active des patients dans la recherche.<\/li>\n<li>Identifier les opportunit\u00e9s pour les patients de participer \u00e0 l\u2019obtention de financements<\/li>\n<\/ul>\n<h3>TABLE RONDE ET DISCUSSION<\/h3>\n<ul>\n<li>Rendu du Groupe de Travail \u201cClinique et Recherche\u201d<\/li>\n<li>Rendu du Groupe de Travail \u00ab Comit\u00e9 Consultatif des Patients \u00bb<\/li>\n<li>Discussion G\u00e9n\u00e9rale \u2013 Prochain meeting<\/li>\n<\/ul>\n<\/div><\/section><\/p><\/div><\/div><!--close column table wrapper. Autoclose: 1 --><\/div><\/div><\/div><!-- close content main div --><\/div><\/div><div id='av_section_4'  class='avia-section main_color avia-section-default avia-no-border-styling  avia-bg-style-scroll  avia-builder-el-24  el_after_av_section  el_before_av_section   container_wrap fullsize' style=' '  ><div class='container' ><div class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-11972'><div class='entry-content-wrapper clearfix'>\n<div class=\"flex_column av_one_fifth  no_margin flex_column_div first  avia-builder-el-25  el_before_av_three_fifth  avia-builder-el-first  \" style='padding:0px 40px 0px 0px ; border-radius:0px; '><\/div><div class=\"flex_column av_three_fifth  no_margin flex_column_div   avia-builder-el-26  el_after_av_one_fifth  el_before_av_one_fifth  \" style='padding:0px 40px 0px 0px ; border-radius:0px; '><div   data-autoplay='false'  data-interval='5'  data-animation='slide'  class='avia-logo-element-container av-border-deactivate avia-logo-grid avia-content-slider avia-smallarrow-slider avia-content-grid-active noHover avia-content-slider1 avia-content-slider-even  avia-builder-el-27  avia-builder-el-no-sibling  ' ><div class='avia-smallarrow-slider-heading  no-logo-slider-heading '><div class='new-special-heading'>&nbsp;<\/div><\/div><div class='avia-content-slider-inner'><div class='slide-entry-wrap' ><div  class='slide-entry flex_column no_margin post-entry slide-entry-overview slide-loop-1 slide-parity-odd  av_one_half first real-thumbnail'><span class='av-partner-fake-img' style='padding-bottom:22.155688622754%; background-image:url(https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/07\/Logo-EJPRD.jpg);'><\/span><\/div><div  class='slide-entry flex_column no_margin post-entry slide-entry-overview slide-loop-2 slide-parity-even  post-entry-last  av_one_half  real-thumbnail'><span class='av-partner-fake-img' style='padding-bottom:22.155688622754%; background-image:url(https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2022\/07\/Logo-Globalskin.jpg);'><\/span><\/div><\/div><\/div><\/div><\/div><div class=\"flex_column av_one_fifth  no_margin flex_column_div   avia-builder-el-28  el_after_av_three_fifth  avia-builder-el-last  \" style='padding:0px 40px 0px 0px ; border-radius:0px; '><\/div>\n<\/p>\n<\/div><\/div><\/div><!-- close content main div --><\/div><\/div><div id='av_section_5'  class='avia-section main_color avia-section-default avia-no-border-styling  avia-bg-style-scroll  avia-builder-el-29  el_after_av_section  avia-builder-el-last   container_wrap fullsize' style='background-color: #f5f5f2;  '  ><div class='container' ><div class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-11972'><div class='entry-content-wrapper clearfix'>\n<div class='flex_column_table av-equal-height-column-flextable -flextable' ><div class=\"flex_column av_one_full  no_margin flex_column_table_cell av-equal-height-column av-align-top av-zero-column-padding first  avia-builder-el-30  el_before_av_one_fourth  avia-builder-el-first  \" style='border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  av_inherit_color '  style='font-size:20px; color:#2d2d35; '  itemprop=\"text\" ><h2 style=\"text-align: center;\">Les 6\u00e8mes Journ\u00e9es de la Cutis Laxa<\/h2>\n<h2 style=\"text-align: center;\">c&rsquo;est aussi &#8230;<strong><br \/>\n<\/strong><\/h2>\n<\/div><\/section><\/div><\/div><!--close column table wrapper. Autoclose: 1 --><div class='flex_column_table av-equal-height-column-flextable -flextable' ><div class=\"flex_column av_one_fourth  no_margin flex_column_table_cell av-equal-height-column av-align-top first  avia-builder-el-32  el_after_av_one_full  el_before_av_one_fourth  column-top-margin\" style='padding:15px; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h4 style=\"text-align: center;\">Des rencontres nouvelles ou des retrouvailles&#8230;.<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/rencontres-par-dela-les-continents\/\">Photos<\/a><\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-13758\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-300x225.jpeg\" alt=\"\" width=\"300\" height=\"225\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-300x225.jpeg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-1030x773.jpeg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-768x576.jpeg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-1536x1152.jpeg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-2048x1536.jpeg 2048w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-1500x1125.jpeg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5083-705x529.jpeg 705w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<div dir=\"auto\" style=\"text-align: center;\"><\/div>\n<\/div><\/section><\/div><div class=\"flex_column av_one_fourth  no_margin flex_column_table_cell av-equal-height-column av-align-top   avia-builder-el-34  el_after_av_one_fourth  el_before_av_one_fourth  column-top-margin\" style='padding:15px; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h4 style=\"text-align: center;\">&#8230;.Des diners festifs&#8230;..<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/repas-conviviaux\">Photos<\/a><\/p>\n<h4 style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-12682\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-225x300.jpg\" alt=\"\" width=\"225\" height=\"300\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-225x300.jpg 225w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-773x1030.jpg 773w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-768x1024.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-1152x1536.jpg 1152w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-1536x2048.jpg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-1125x1500.jpg 1125w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-529x705.jpg 529w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_195033-scaled.jpg 1920w\" sizes=\"auto, (max-width: 225px) 100vw, 225px\" \/><\/h4>\n<div dir=\"auto\" style=\"text-align: center;\"><\/div>\n<\/div><\/section><\/div><div class=\"flex_column av_one_fourth  no_margin flex_column_table_cell av-equal-height-column av-align-top   avia-builder-el-36  el_after_av_one_fourth  el_before_av_one_fourth  column-top-margin\" style='padding:15px; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h4 style=\"text-align: center;\">&#8230;.. des moments agr\u00e9ables&#8230;&#8230;.<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/pauses-et-moments-de-detente\/\">Photos<\/a><\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-12685\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-300x225.jpeg\" alt=\"\" width=\"300\" height=\"225\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-300x225.jpeg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-1030x773.jpeg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-768x576.jpeg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-1536x1152.jpeg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-2048x1536.jpeg 2048w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-1500x1125.jpeg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_5045-705x529.jpeg 705w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<div dir=\"auto\" style=\"text-align: center;\"><\/div>\n<\/div><\/section><\/div><div class=\"flex_column av_one_fourth  no_margin flex_column_table_cell av-equal-height-column av-align-top   avia-builder-el-38  el_after_av_one_fourth  avia-builder-el-last  column-top-margin\" style='padding:15px; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:16px; '  itemprop=\"text\" ><h4 style=\"text-align: center;\">&#8230;.. Et si difficile de repartir.<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/au-revoir\/\">Photos<\/a><\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-13761\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-199x300.jpg\" alt=\"\" width=\"199\" height=\"300\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-199x300.jpg 199w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-685x1030.jpg 685w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-768x1155.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-1021x1536.jpg 1021w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-1362x2048.jpg 1362w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-997x1500.jpg 997w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2-469x705.jpg 469w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220916_142917-2.jpg 1476w\" sizes=\"auto, (max-width: 199px) 100vw, 199px\" \/><\/p>\n<div dir=\"auto\" style=\"text-align: center;\"><\/div>\n<\/div><\/section><\/div><\/div><!--close column table wrapper. Autoclose: 1 -->\n\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-11972","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>6\u00e8mes JOURNEES DE LA CUTIS LAXA - CUTIS LAXA INTERNATIONALE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cutislaxa.org\/fr\/6emes-journees-de-la-cutis-laxa\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"6\u00e8mes JOURNEES DE LA CUTIS LAXA - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/6emes-journees-de-la-cutis-laxa\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:modified_time\" content=\"2023-02-06T14:02:49+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02611-2-259x300.jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"9 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/6emes-journees-de-la-cutis-laxa\/\",\"url\":\"https:\/\/www.cutislaxa.org\/fr\/6emes-journees-de-la-cutis-laxa\/\",\"name\":\"6\u00e8mes JOURNEES DE LA CUTIS LAXA - 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