{"id":3691,"date":"2016-05-11T23:25:50","date_gmt":"2016-05-11T23:25:50","guid":{"rendered":"http:\/\/www.cutislaxa.org\/a-propos\/our-aims-projects\/"},"modified":"2025-09-02T17:23:03","modified_gmt":"2025-09-02T15:23:03","slug":"our-aims-projects","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/fr\/a-propos\/our-aims-projects\/","title":{"rendered":"Nos Objectifs"},"content":{"rendered":"<div id='av_section_1'  class='avia-section main_color avia-section-large avia-no-border-styling  avia-bg-style-scroll  avia-builder-el-0  avia-builder-el-no-sibling   container_wrap fullsize' style=' '  ><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-3691'><div class='entry-content-wrapper clearfix'>\n<div  style='padding-bottom:30px; font-size:70px;' class='av-special-heading av-special-heading-h1  blockquote modern-quote  avia-builder-el-1  el_before_av_one_full  avia-builder-el-first  av-inherit-size '><h1 class='av-special-heading-tag '  itemprop=\"headline\"  >Nos Objectifs<\/h1><div class='special-heading-border'><div class='special-heading-inner-border' ><\/div><\/div><\/div>\n<div class=\"flex_column av_one_full  flex_column_div av-zero-column-padding first  avia-builder-el-2  el_after_av_heading  el_before_av_two_fifth  \" style='border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:18px; '  itemprop=\"text\" ><h4><span style=\"color: #db0931;\">Nous sommes une Association de b\u00e9n\u00e9voles, \u00e0 but non-lucratif, r\u00e9gie par la Loi Fran\u00e7aise de 1901.<\/span><\/h4>\n<p>Nos Statuts ont \u00e9t\u00e9 enregistr\u00e9s \u00e0 la Pr\u00e9fecture de La Rochelle sous le num\u00e9ro 0173004943.<\/p>\n<\/div><\/section><\/div><div class=\"flex_column av_two_fifth  flex_column_div av-zero-column-padding first  avia-builder-el-4  el_after_av_one_full  el_before_av_two_fifth  column-top-margin\" style='border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '   itemprop=\"text\" ><h1><\/h1>\n<p><strong>Ces objectifs sont inscrits dans nos statuts :<\/strong><\/p>\n<ul>\n<li>Rompre l\u2019isolement des patients et de leurs familles en France et \u00e0 l\u2019\u00e9tranger.<\/li>\n<li>Regrouper toutes les personnes susceptibles de soutenir nos actions.<\/li>\n<li>Rechercher, de par le monde, le plus possible de patients atteints de Cutis Laxa pour\u00a0constituer la mati\u00e8re de recherche.<\/li>\n<li>R\u00e9unir toutes les donn\u00e9es concernant la Cutis Laxa.<\/li>\n<li>Informer les m\u00e9dias et le monde m\u00e9dical sur la Cutis Laxa.<\/li>\n<li>Faire reconna\u00eetre cette maladie comme maladie orpheline.<\/li>\n<li>\u0152uvrer pour le soutien et le financement de la recherche.<\/li>\n<\/ul>\n<p><strong>et surtout fournir des ressources t\u00e9l\u00e9chargeables :<br \/>\n<\/strong><\/p>\n<p><a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Guide-handicap-peau_web-1.pdf\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-15830\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Handicap-211x300.jpg\" alt=\"\" width=\"211\" height=\"300\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Handicap-211x300.jpg 211w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Handicap-496x705.jpg 496w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Handicap.jpg 559w\" sizes=\"auto, (max-width: 211px) 100vw, 211px\" \/><\/a>\u00a0 <a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Guide-patients-handicap-peau_12-23_web-1.pdf\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-15833\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Patients-212x300.jpg\" alt=\"\" width=\"212\" height=\"300\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Patients-212x300.jpg 212w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Patients-498x705.jpg 498w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-Guide-Patients.jpg 560w\" sizes=\"auto, (max-width: 212px) 100vw, 212px\" \/><\/a><\/p>\n<p><a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/ESOSP-Maladies-de-peau-1.pdf\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-15808\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-petits-citoyens-216x300.jpg\" alt=\"\" width=\"216\" height=\"300\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-petits-citoyens-216x300.jpg 216w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-petits-citoyens-508x705.jpg 508w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-petits-citoyens.jpg 561w\" sizes=\"auto, (max-width: 216px) 100vw, 216px\" \/><\/a>\u00a0 <a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Livret-Ecole-Fimarad-1.pdf\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-15825\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-livret-Fimarad-213x300.jpg\" alt=\"\" width=\"213\" height=\"300\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-livret-Fimarad-213x300.jpg 213w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Image-livret-Fimarad.jpg 279w\" sizes=\"auto, (max-width: 213px) 100vw, 213px\" \/><\/a><\/p>\n<\/div><\/section><\/div><div class=\"flex_column av_two_fifth  flex_column_div av-zero-column-padding   avia-builder-el-6  el_after_av_two_fifth  el_before_av_one_fifth  column-top-margin\" style='border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '   itemprop=\"text\" ><p><strong>Mais aussi :<br \/>\n<\/strong><\/p>\n<ul>\n<li>Permettre \u00e0 des malades confront\u00e9s \u00e0 des sympt\u00f4mes associ\u00e9s identiques ou similaires d\u2019\u00e9changer leurs exp\u00e9riences.<\/li>\n<li>Garantir \u00e0 chacune des familles de malades la confidentialit\u00e9 des informations qu\u2019elle nous transmet. Seules seront transmises,\u00a0 soit \u00e0 d\u2019autres familles soit \u00e0 des \u00e9quipes m\u00e9dicales, les informations pour lesquelles une autorisation de transmission aura \u00e9t\u00e9 sign\u00e9e.<\/li>\n<li>Permettre une meilleur connaissance des maladies de la peau et aider \u00e0 l&rsquo;inclusion des enfants atteints, sans discrimination, ni harc\u00e8lement, via des outils t\u00e9l\u00e9chargeables :\u00a0 <a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Formulaire-MDPH-VF-2023.12.14-1.pdf\">\u00ab\u00a0Et si on se parlait&#8230;des maladies de la peau\u00a0\u00bb\u00a0<\/a> <a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Livret-Ecole-Fimarad-1.pdf\">\u00ab\u00a0accueillir un enfant atteint d&rsquo;une maladie de la peau\u00a0\u00bb<\/a><\/li>\n<\/ul>\n<p>POUR ATTEINDRE CES OBJECTIFS\u00a0,<\/p>\n<p>Chaque ann\u00e9e nous \u00e9tablissons des <strong>Projets<\/strong> que nous souhaitons pouvoir r\u00e9aliser au cours de l\u2019ann\u00e9e. Ce n\u2019est pas toujours facile\u2026.. Il faut sans cesse adapter nos id\u00e9es \u00e0 nos capacit\u00e9s financi\u00e8res\u2026\u2026.. et nos capacit\u00e9s financi\u00e8res sont minces.<\/p>\n<\/div><\/section><\/div><div class=\"flex_column av_one_fifth  flex_column_div   avia-builder-el-8  el_after_av_two_fifth  avia-builder-el-last  column-top-margin\" style='padding:1%; background-color:#f5f5f2; border-radius:0px; '><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '   itemprop=\"text\" ><p><a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2025\/09\/Projets-2025-F.pdf\"><strong>PROJETS:<\/strong><\/a><\/p>\n<ul>\n<li><a href=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2025\/09\/Projets-2025-F.pdf\">Projets 2025<\/a><\/li>\n<li><a href=\"https:\/\/www.cutislaxa.org\/fr\/projets-2024-f-2\/\">Projets 2024<\/a><\/li>\n<li><a href=\"https:\/\/www.cutislaxa.org\/fr\/projets-2023-f-2\/\">Projets-2023<\/a><\/li>\n<li><a href=\"https:\/\/www.cutislaxa.org\/fr\/projets-2022-f-2\/\">Projets-2022<\/a><\/li>\n<\/ul>\n<\/div><\/section><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":3412,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-3691","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - 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