{"id":12026,"date":"2022-01-30T13:46:11","date_gmt":"2022-01-30T12:46:11","guid":{"rendered":"https:\/\/www.cutislaxa.org\/6th-cutis-laxa-days\/"},"modified":"2023-02-06T15:01:05","modified_gmt":"2023-02-06T14:01:05","slug":"6as-jornadas-de-cutis-laxa","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/es\/6as-jornadas-de-cutis-laxa\/","title":{"rendered":"6as JORNADAS DE 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-12026'><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>6as JORNADAS DE CUTIS LAXA<\/b><\/h1><div class ='av-subheading av-subheading_below  ' style='font-size:30px;'><p>13 &#8211; 16 Septiembre 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 y 14 de septiembre<\/h3>\n<h3 style=\"text-align: center;\">D\u00eda CL\u00cdNICO en el Centro de Gen\u00e9tica M\u00e9dica<\/h3>\n<h3 style=\"text-align: center;\">DEL HOSPITAL UNIVERSITARIO DE GANTE<\/h3>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/es\/13-y-14-sept2022-jornadas-medicas\/\"><span style=\"color: #ff0000;\">(Haga clic aqu\u00ed para ver el informe y las fotos)<\/span><\/a><\/p>\n<p style=\"text-align: left;\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11643 aligncenter\" style=\"display: block; margin-left: auto; margin-right: auto;\" 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><\/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-12026'><div class='entry-content-wrapper clearfix'>\n<div class=\"flex_column av_one_fifth  flex_column_div 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  flex_column_div 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-14341 avia-img-lazy-loading-not-14341 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\" ><h2 style=\"text-align: center;\"><strong>Mensaje de la Presidenta de Cutis Laxa International<\/strong><\/h2>\n<p>Qu\u00e9 alegr\u00eda encontraros a todos, especialmente despu\u00e9s de los a\u00f1os de Covid, que nos han mantenido alejados.<\/p>\n<p>\u00a1El sexto D\u00eda de la Cutis Laxa fue un gran \u00e9xito!<\/p>\n<p>Es la primera vez que tantos enfermos (23) se reunieron,\u00a0;<br \/>\nLa primera vez que estuvieron representados tantos pa\u00edse\u00a0 (11)\u00a0;<br \/>\nLa primera vez que la conferencia reuni\u00f3 a tantos m\u00e9dicos e investigadores interesados en la Cutis Laxa.<\/p>\n<p>Siempre es muy dif\u00edcil dar cuenta con la mayor precisi\u00f3n posible de lo que sucedi\u00f3 durante 4 d\u00edas, sobre todo cuando fueron tan intensos: Muchos momentos fuertes en emociones, mucha informaci\u00f3n, mucha alegr\u00eda, muchas risas, pero de tristeza tambi\u00e9n &#8230;<\/p>\n<p>Las fotos hablan por s\u00ed solas, as\u00ed son los d\u00edas Cutis Laxa<\/p>\n<p>Marie-Claude Boiteux, Presidenta<\/p>\n<\/div><\/section><\/p><\/div><div class=\"flex_column av_one_fifth  flex_column_div av-zero-column-padding   avia-builder-el-12  el_after_av_three_fifth  avia-builder-el-last  \" style='border-radius:0px; '><\/div>\n<\/p>\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-12026'><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  '  style='font-size:14px; '  itemprop=\"text\" ><h3>PROGRAMA<\/h3>\n<p>En los magn\u00edficos edificios hist\u00f3ricos de la Universidad de Gante, los participantes en la conferencia fueron m\u00e1s numerosos que nunca. Gracias a la financiaci\u00f3n obtenida de la Universidad de Gante , de EADV, de ERN-Skin, de FWO y del programa europeo EJPRD, fue posible organizar este simposio.<\/p>\n<p>C\u2019\u00e9tait tr\u00e8s \u00e9mouvant de voir une salle aussi pleine !<\/p>\n<p style=\"text-align: center;\"><span style=\"color: #333333;\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-13889 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\" \/><\/span><\/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\/fr\/resultats-es-2\/\">Resultados del Questionario de Satisfaccion<\/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(255,255,255,0.71); border-width:1px; border-style:solid; padding:15px; background-color:rgba(255,255,255,0.71); 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>Jueves<br \/>\n15 de septiembre de 2022<\/strong><\/h4>\n<hr \/>\n<h4 style=\"text-align: center;\"><strong>SYMPOSIO<\/strong><\/h4>\n<p style=\"text-align: center;\"><span style=\"color: #ff0000;\">(Para ver los res\u00famenes de las presentaciones, haga clic en sus t\u00edtulos)<\/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-14353 avia-img-lazy-loading-not-14353 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  '   itemprop=\"text\" ><h3>SESI\u00d3N I: Diagn\u00f3stico y atenci\u00f3n integral de Cutis Laxa<\/h3>\n<ul>\n<li>Prof. Dr. Bert Callewaert, MD, (Ghent, B\u00e9lgica): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-prof-dr-bert-callewaertclasificacion-de-los-tipos-de-cl\/\">Clasificaci\u00f3n de tipos de CL y protocolos de soporte\u00a0<\/a><\/li>\n<li>Dra. Laura Mui\u00f1o Mosquera, MD, (Ghent, B\u00e9lgica): <a href=\"https:\/\/www.cutislaxa.org\/es\/dr-laura-muino-mosquera-md-gante-belgica-seguimiento-cardiovascular-de-la-cl\/\">Seguimiento Cardiovascular de los CL\u00a0<\/a><\/li>\n<li>Sra. Klara Farkas, MD (Budapest, Hongrie): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-sra-klara-farkas_de-las-tecnicas-innovadoras-de-imagen\/\">Posibles aplicaciones e inter\u00e9s de las nuevas t\u00e9cnicas de imagen de la piel en las enfermedades del tejido conjuntivo<\/a><\/li>\n<li>Prof. Dra. Christine Bodemer, MD, (Paris, Francia): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-prof-dr-christine-bodemer_inclusion-de-la-cl-en-ern-skin-ern-ithaca\/\">Inclusi\u00f3n de la CL en ERN Skin y ERN-Ithaca<\/a><\/li>\n<\/ul>\n<h3>SESI\u00d3N II: Fisiopatolog\u00eda y \u00faltimos descubrimientos en los diferentes tipos de Subtypes<\/h3>\n<ul>\n<li>Prof. Gerhard. Sengle (Cologne, Alemania): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-prof-gerhard-sengle_biologia-de-la-matriz-que-podemos-modelos-animales\/\">Biolog\u00eda de la Matriz &#8211; \u00bfQu\u00e9 podemos aprender de los modelos animales?<\/a><\/li>\n<li>Sra. Aude Beyens, MD, (Ghent, B\u00e9lgica): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-sra-aude-beyens_defectos-estructurales-de-las-proteinas-del-tejido\/\">Defectos estructurales de las prote\u00ednas del tejido conectivo y CL<\/a><\/li>\n<li>Prof. Uwe Kornak, MD, (G\u00f6ttingen, Alemania): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-prof-dr-uwe-kornak_la-via-secretoria-glicosilacion-y-cl\/\">V\u00eda secretoria, Glycosylation y Cutis Laxa<\/a><\/li>\n<\/ul>\n<h3>SESI\u00d3N III: Fisiopatolog\u00eda y \u00faltimos descubrimientos en los diferentes tipos de CL (continuaci\u00f3n)<\/h3>\n<ul>\n<li>Dra. Thatjana Gardeitchik, MD, (Nijmegen, Pa\u00edses Bajos.): <a href=\"https:\/\/www.cutislaxa.org\/es\/dr-thatjana-gardeitchik-md-nijmegen-holanda-defectos-neurometabolicos-en-cl\/\">Defectos neurometab\u00f3licos en la Cutis Laxa<\/a><\/li>\n<li>Dr. Bj\u00f6rn Fischer-Zirnsak (Berlin, Alemania): <a href=\"https:\/\/www.cutislaxa.org\/es\/dr-bjorn-fischer-zirnsak-berlin-alemania-mitocondrias-y-cl\/\">Mitrochondries y Cutis Laxa<\/a><\/li>\n<\/ul>\n<h3>SESI\u00d3N IV: Organizaci\u00f3n de la Atenci\u00f3n<\/h3>\n<ul>\n<li>Prof. Dr. Zsolt Urban (Pittsburgh-EEUU): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-prof-dr-zsolt-urban_investigaciones-estadounidenses-sobre\/\">Investigaci\u00f3n estadounidense sobre la Cutis Laxa<\/a><\/li>\n<li>Sra. Marie-Claude Boiteux (Presidente de Cutis laxa Internationale): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-marie-claude-boiteux_perspectivas-de-los-pacientes-y-de-los-acompanantes\/\">Perspectivas de los Pacientes y Acompa\u00f1antes: La trayectoria de los pacientes<\/a><\/li>\n<li>Sra. Elif Yilmaz, MD (Istanbul, Turkey): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-mme-elif-yilmaz-gulec_cutis-laxa-en-turquia\/\">Cutis Laxa en Turqu\u00eda: desaf\u00edos, oportunidades y colaboraciones\u00a0<\/a><\/li>\n<li>Dra. Karolien Aelbrecht (Ghent, B\u00e9lgica): <a href=\"https:\/\/www.cutislaxa.org\/es\/202209-dr-karolien-aelbrecht-ghent_a-participacion-de-los-pacientes-imprescindible\/\">Participaci\u00f3n de los pacientes: \u00a1Imprescindible!<\/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>Viernes<br \/>\n16 de septiembre de 2022<\/strong><\/h4>\n<hr \/>\n<h4 style=\"text-align: center;\"><strong>COLABORACI\u00d3N EN INVESTIGACI\u00d3N<br \/>\n<\/strong><\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/es\/16-septiembre-2022-colaboracion-en-investigacion\/\"><span style=\"color: #ff0000;\">(Haga clic aqu\u00ed para ver el informe y las fotos)<\/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-12680 avia-img-lazy-loading-not-12680 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  '   itemprop=\"text\" ><h3><span style=\"color: #000000;\">JORNADA DE COLABORACI\u00d3N EN INVESTIGACI\u00d3N \u00a0\u00a0<\/span><\/h3>\n<p>Prof. Dr. Bert Callewaert: Objetivos de esta jornada de colaboraci\u00f3n<\/p>\n<ul>\n<li>El panorama actual de la investigaci\u00f3n sobre la cutis laxa<\/li>\n<li>Desaf\u00edos de la investigaci\u00f3n en enfermedades extremadamente raras<\/li>\n<li>Impulsar la colaboraci\u00f3n (internacional) en la investigaci\u00f3n de la cutis laxa<\/li>\n<li>Incluir la perspectiva del paciente en la investigaci\u00f3n de la cutis laxa<\/li>\n<li>Definir los objetivos de la investigaci\u00f3n sobre la cutis laxa a corto y largo plazo<\/li>\n<li>Obtener financiaci\u00f3n en un contexto internacional<\/li>\n<\/ul>\n<h3>\u00a0\u00a0Grupo de trabajo \u201cCL\u00cdNICA E INVESTIGACI\u00d3N\u201d<\/h3>\n<ul>\n<li>Inventario de conocimientos disponibles<\/li>\n<li>Inventario de proyectos de investigaci\u00f3n en curso: intercambio de conocimientos<\/li>\n<li>Establecer un grupo de trabajo y protocolos de trabajo sobre nosolog\u00eda y buenas pr\u00e1cticas<\/li>\n<li>Establecer un grupo espec\u00edfico \u00abad hoc\u00bb para la atenci\u00f3n cl\u00ednica<\/li>\n<li>Interoperabilidad entre las bases de datos locales y los biobancos<\/li>\n<li>Redefinir las iniciativas internacionales como Genematcher y Variantmatcher bajo un \u00fanico aspecto spec\u00edfico de la enfermedad<\/li>\n<li>Identificar futuras colaboraciones de investigaci\u00f3n<\/li>\n<li>Planificar la manera de obtener financiaci\u00f3n (redes de formaci\u00f3n innovadoras, investigaci\u00f3n interdisciplinar (acciones de coste), &#8230;)<\/li>\n<\/ul>\n<h3>Grupo de trabajo \u00abCOMIT\u00c9 CONSULTIVO DE PACIENTES \u00ab<\/h3>\n<ul>\n<li>Debates globales de los resultados de los grupos focales y de \u00ablas carreras de obst\u00e1culos de los pacientes\u00bb.<\/li>\n<li>Identificar las principales cargas de la enfermedad<\/li>\n<li>Identificar y formular las futuras necesidades de investigaci\u00f3n y atenci\u00f3n<\/li>\n<li>Identificar los puntos clave para la participaci\u00f3n activa de los pacientes en la investigaci\u00f3n<\/li>\n<li>Identificar oportunidades para que los pacientes participen en la obtenci\u00f3n de financiaci\u00f3n<\/li>\n<\/ul>\n<h3>MESA REDONDA Y DEBATE<\/h3>\n<ul>\n<li>Informe del grupo de trabajo \u00abCl\u00ednica e Investigaci\u00f3n\u00bb<\/li>\n<li>Informe del grupo de trabajo \u00abComit\u00e9 Consultivo de Pacientes\u00bb<\/li>\n<li>Debate general \u2013 Pr\u00f3xima reuni\u00f3n<\/li>\n<\/ul>\n<\/div><\/section><\/p><\/div><\/div><!--close column table wrapper. Autoclose: 1 -->\n\n<\/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-12026'><div class='entry-content-wrapper clearfix'>\n<div class=\"flex_column av_one_fifth  flex_column_div av-zero-column-padding first  avia-builder-el-25  el_before_av_three_fifth  avia-builder-el-first  \" style='border-radius:0px; '><\/div><div class=\"flex_column av_three_fifth  flex_column_div av-zero-column-padding   avia-builder-el-26  el_after_av_one_fifth  el_before_av_one_fifth  \" style='border-radius:0px; '><p><div  style='height:50px' class='hr hr-invisible   avia-builder-el-27  el_before_av_partner  avia-builder-el-first '><span class='hr-inner ' ><span class='hr-inner-style'><\/span><\/span><\/div><br \/>\n<div   data-autoplay='false'  data-interval='5'  data-animation='slide'  class='avia-logo-element-container  avia-logo-slider avia-content-slider avia-smallarrow-slider avia-content-slider-active noHover avia-content-slider1 avia-content-slider-even  avia-builder-el-28  el_after_av_hr  avia-builder-el-last  ' ><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><\/p><\/div><div class=\"flex_column av_one_fifth  flex_column_div av-zero-column-padding   avia-builder-el-29  el_after_av_three_fifth  avia-builder-el-last  \" style='border-radius:0px; '><\/div>\n\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-30  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-12026'><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-31  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:#db0931; '  itemprop=\"text\" ><h2 style=\"text-align: center;\"><strong>Los 6 D\u00edas Cutis Laxa es tambi\u00e9n&#8230;<\/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-33  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;\">&#8230; Nuevos encuentros y reencuentros&#8230;.<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/es\/reuniendose-mas-alla-de-los-continentes\/\">Fotos<\/a><\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-13759\" 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><\/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-35  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;. Comidas festivas &#8230;<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/es\/comidas\">Fotos<\/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><\/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-37  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;. momentos agradables&#8230;.<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/es\/pausas-y-momentos-de-distension\/\">Fotos<\/a><\/p>\n<h4 style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-12685 aligncenter\" 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\" \/><\/h4>\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-39  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;\"><\/h4>\n<h4 style=\"text-align: center;\">&#8230;&#8230;. Y tan dif\u00edcil volver.<\/h4>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/es\/adios\/\">Fotos<\/a><\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-13762\" 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><\/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-12026","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>6as JORNADAS DE 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\/6th-cutis-laxa-days\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"6as JORNADAS DE CUTIS LAXA - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/6th-cutis-laxa-days\/\" \/>\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=\"2023-02-06T14:01:05+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=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"9 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/6th-cutis-laxa-days\/\",\"url\":\"https:\/\/www.cutislaxa.org\/6th-cutis-laxa-days\/\",\"name\":\"6as JORNADAS DE CUTIS LAXA - 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