{"id":270,"date":"2024-03-18T14:57:50","date_gmt":"2024-03-18T13:57:50","guid":{"rendered":"https:\/\/wasipope.cyon.site\/unsere-positionen\/"},"modified":"2024-03-28T10:36:07","modified_gmt":"2024-03-28T09:36:07","slug":"notre-position","status":"publish","type":"page","link":"https:\/\/ig-seltene-krankheiten.ch\/fr\/notre-position\/","title":{"rendered":"Notre Position"},"content":{"rendered":"<div id='layer_slider_1'  class='avia-layerslider main_color avia-shadow  avia-builder-el-0  el_before_av_submenu  avia-builder-el-first  container_wrap fullsize'  style='height: 236px; max-width: 1280px; margin: 0 auto;'  ><\/div>\n<div class='clear'><\/div><div id='sub_menu1'  class='av-submenu-container av-2692h-25ee8bbfb18b376a00944328241c2a9b header_color av-switch-768  avia-builder-el-1  el_after_av_layerslider  el_before_av_section  av-sticky-submenu submenu-not-first container_wrap fullsize' style='z-index:301' ><div class='container av-menu-mobile-active av-submenu-pos-center'><a href=\"#\" class=\"mobile_menu_toggle\" aria-hidden='true' data-av_icon='\ue8a5' data-av_iconfont='entypo-fontello'><span class=\"av-current-placeholder\">Menu<\/span><\/a><ul id=\"menu-hauptnavi\" class=\"av-subnav-menu\" role=\"menu\"><li role=\"menuitem\" id=\"menu-item-43\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-top-level menu-item-top-level-1\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/unsere-positionen\/\" itemprop=\"url\" tabindex=\"0\"><span class=\"avia-bullet\"><\/span><span class=\"avia-menu-text\">Notre Position<\/span><span class=\"avia-menu-fx\"><span class=\"avia-arrow-wrap\"><span class=\"avia-arrow\"><\/span><\/span><\/span><\/a><\/li>\n<li role=\"menuitem\" id=\"menu-item-42\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-top-level menu-item-top-level-2\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/ueber-uns\/\" itemprop=\"url\" tabindex=\"0\"><span class=\"avia-bullet\"><\/span><span class=\"avia-menu-text\">Qui sommes-nous<\/span><span class=\"avia-menu-fx\"><span class=\"avia-arrow-wrap\"><span class=\"avia-arrow\"><\/span><\/span><\/span><\/a><\/li>\n<li role=\"menuitem\" id=\"menu-item-41\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-top-level menu-item-top-level-3\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/seltene-krankheiten\/\" itemprop=\"url\" tabindex=\"0\"><span class=\"avia-bullet\"><\/span><span class=\"avia-menu-text\">Maladies rares<\/span><span class=\"avia-menu-fx\"><span class=\"avia-arrow-wrap\"><span class=\"avia-arrow\"><\/span><\/span><\/span><\/a>\n\n\n<ul class=\"sub-menu\">\n\t<li role=\"menuitem\" id=\"menu-item-40\" class=\"menu-item menu-item-type-post_type menu-item-object-page\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/herausforderungen\/\" itemprop=\"url\" tabindex=\"0\"><span class=\"avia-bullet\"><\/span><span class=\"avia-menu-text\">D\u00e9fis<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li role=\"menuitem\" id=\"menu-item-39\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-top-level menu-item-top-level-4\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/parlamentarische-vorstoesse\/\" itemprop=\"url\" tabindex=\"0\"><span class=\"avia-bullet\"><\/span><span class=\"avia-menu-text\">Interventions parlementaires<\/span><span class=\"avia-menu-fx\"><span class=\"avia-arrow-wrap\"><span class=\"avia-arrow\"><\/span><\/span><\/span><\/a><\/li>\n<li role=\"menuitem\" id=\"menu-item-38\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-top-level menu-item-top-level-5\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/news\/\" itemprop=\"url\" tabindex=\"0\"><span class=\"avia-bullet\"><\/span><span class=\"avia-menu-text\">Actualit\u00e9s<\/span><span class=\"avia-menu-fx\"><span class=\"avia-arrow-wrap\"><span class=\"avia-arrow\"><\/span><\/span><\/span><\/a><\/li>\n<\/ul><\/div><\/div><div class='sticky_placeholder'><\/div>\n<div id='av_section_1'  class='avia-section av-qmw1-cb037384523173231d090150271d8e4b main_color avia-section-default avia-no-border-styling  avia-builder-el-2  el_after_av_submenu  avia-builder-el-last  avia-bg-style-scroll container_wrap fullsize'  ><div class='container av-section-cont-open' ><div class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-270'><div class='entry-content-wrapper clearfix'>\n<div  class='flex_column av-1erbx-694f290837229470ea45886f917de6fa av_two_third  avia-builder-el-3  el_before_av_one_third  avia-builder-el-first  first flex_column_div  '     ><section  class='av_textblock_section av-lu1bsq5j-73e2ab7ba61b61cb1fde9f4a03ff6435 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h1>Notre Position<\/h1>\n<\/div><\/section><br \/>\n<section  class='av_textblock_section av-lu1buskt-39f43d0c3a2dde2e760ee93d046bf52a '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p>Les patients souffrant d\u2019une maladie rare sont confront\u00e9s \u00e0 de nombreuses difficult\u00e9s: bien souvent, il faut des ann\u00e9es avant que soit pos\u00e9 le diagnostic correct. Les connaissances relatives \u00e0 l&rsquo;\u00e9volution de la maladie sont souvent lacunaires et les traitements m\u00e9dicaux ad\u00e9quats sont rares. Si tant est qu&rsquo;il existe un traitement ad\u00e9quat pour les patients souffrant d&rsquo;une maladie rare, son remboursement par la caisse maladie est souvent incertain. Les lacunes r\u00e9glementaires peuvent conduire \u00e0 des situations tr\u00e8s pr\u00e9caires et \u00e0 des in\u00e9galit\u00e9s majeures dans le traitement.<\/p>\n<p>La CI Maladies rares souhaite participer \u00e0 l&rsquo;am\u00e9lioration de la situation des patients de mani\u00e8re durable, combler les lacunes r\u00e9glementaires existantes ainsi que sensibiliser l&rsquo;opinion publique \u00e0 la question des maladies rares en Suisse.<\/p>\n<p>La Ci Maladies rares poursuit les objectifs suivants:<\/p>\n<\/div><\/section><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-lu1chcex-1aef788520fa545754959365d8e3c1df\">\n#top .togglecontainer.av-lu1chcex-1aef788520fa545754959365d8e3c1df p.toggler{\nbackground-color:#ffffff;\nborder-color:#5fb3a6;\n}\n#top .togglecontainer.av-lu1chcex-1aef788520fa545754959365d8e3c1df p.toggler.activeTitle{\ncolor:#5fb3a6;\nborder-color:#5fb3a6;\n}\n#top .togglecontainer.av-lu1chcex-1aef788520fa545754959365d8e3c1df p.toggler.activeTitle .toggle_icon, #top .togglecontainer.av-lu1chcex-1aef788520fa545754959365d8e3c1df p.toggler.activeTitle .toggle_icon > span{\ncolor:#5fb3a6;\nborder-color:#5fb3a6;\n}\n#top .togglecontainer.av-lu1chcex-1aef788520fa545754959365d8e3c1df .toggle_wrap .toggle_content{\nbackground-color:#ffffff;\nborder-color:#5fb3a6;\n}\n<\/style>\n<div  class='togglecontainer av-lu1chcex-1aef788520fa545754959365d8e3c1df  avia-builder-el-6  el_after_av_textblock  el_before_av_textblock  toggle_close_all hasCurrentStyle' >\n<section class='av_toggle_section av-lu1cfbs5-70418cea4c7e8b6760459242c480b8fa'  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div role=\"tablist\" class=\"single_toggle\" data-tags=\"{Tout} \"  ><p data-fake-id='#toggle-id-1' class='toggler   av-inherit-border-color'  itemprop=\"headline\"  role='tab' tabindex='0' aria-controls='toggle-id-1'>1. Am\u00e9lioration du suivi des patients<span class=\"toggle_icon\"><span class=\"vert_icon\"><\/span><span class=\"hor_icon\"><\/span><\/span><\/p><div id='toggle-id-1' class='toggle_wrap  '  ><div class='toggle_content invers-color av-inherit-border-color'  itemprop=\"text\" ><ul>\n<li>s&rsquo;assurer que tous les patients touch\u00e9s pourront b\u00e9n\u00e9ficier d&rsquo;un diagnostic correct, de th\u00e9rapies ad\u00e9quates ainsi que d&rsquo;un suivi de qualit\u00e9;<\/li>\n<li>r\u00e9glementer le financement d&rsquo;un plan d&rsquo;action dans le domaine des maladies rares;<\/li>\n<li>favoriser le rapprochement et l&rsquo;\u00e9change d&rsquo;informations entre les sp\u00e9cialistes.<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/section>\n<section class='av_toggle_section av-lu1cfpw4-788f8a26fd838592a3c71a393716fe83'  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div role=\"tablist\" class=\"single_toggle\" data-tags=\"{Tout} \"  ><p data-fake-id='#toggle-id-2' class='toggler   av-inherit-border-color'  itemprop=\"headline\"  role='tab' tabindex='0' aria-controls='toggle-id-2'>2. Cr\u00e9ation d\u2018un plan d\u2019action national<span class=\"toggle_icon\"><span class=\"vert_icon\"><\/span><span class=\"hor_icon\"><\/span><\/span><\/p><div id='toggle-id-2' class='toggle_wrap  '  ><div class='toggle_content invers-color av-inherit-border-color'  itemprop=\"text\" ><ul>\n<li>soutenir activement, \u00e9laborer, promouvoir la strat\u00e9gie nationale \u00e0 adopter.<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/section>\n<section class='av_toggle_section av-lu1cg9a1-4d8c333701e2a98f7bae5b163a1ba012'  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div role=\"tablist\" class=\"single_toggle\" data-tags=\"{Tout} \"  ><p data-fake-id='#toggle-id-3' class='toggler   av-inherit-border-color'  itemprop=\"headline\"  role='tab' tabindex='0' aria-controls='toggle-id-3'>3. Renforcer la sensibilisation<span class=\"toggle_icon\"><span class=\"vert_icon\"><\/span><span class=\"hor_icon\"><\/span><\/span><\/p><div id='toggle-id-3' class='toggle_wrap  '  ><div class='toggle_content invers-color av-inherit-border-color'  itemprop=\"text\" ><ul>\n<li>sensibiliser le monde politique, l\u2019administration et l\u2019opinion \u00e0 la cause des maladies orphelines;<\/li>\n<li>cr\u00e9er une plateforme d&rsquo;\u00e9change et de coordination (table ronde).<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/section>\n<section class='av_toggle_section av-lu1ch5cy-c31a5cac6f7424ae4513702f337ed9c4'  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div role=\"tablist\" class=\"single_toggle\" data-tags=\"{Tout} \"  ><p data-fake-id='#toggle-id-4' class='toggler   av-inherit-border-color'  itemprop=\"headline\"  role='tab' tabindex='0' aria-controls='toggle-id-4'>4. Soutien de la recherche et du d\u00e9veloppement<span class=\"toggle_icon\"><span class=\"vert_icon\"><\/span><span class=\"hor_icon\"><\/span><\/span><\/p><div id='toggle-id-4' class='toggle_wrap  '  ><div class='toggle_content invers-color av-inherit-border-color'  itemprop=\"text\" ><ul>\n<li>am\u00e9liorer la position des maladies rares dans l&rsquo;\u00e9chelle des priorit\u00e9s de la recherche fondamentale et de la recherche clinique;<\/li>\n<li>cr\u00e9er des centres de comp\u00e9tences nationaux;<\/li>\n<li>collaborer avec les centres et les r\u00e9seaux de r\u00e9f\u00e9rence europ\u00e9ens ou internationaux;<\/li>\n<li>favoriser l&rsquo;\u00e9change d&rsquo;informations et la collaboration entre les sp\u00e9cialistes, les patients et l&rsquo;administration;<\/li>\n<li>promouvoir les maladies rares sur le plan de la recherche fondamentale et de la recherche clinique.<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/section>\n<\/div><br \/>\n<section  class='av_textblock_section av-lu1chsid-a83e885847e8ca135475660f0610d316 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p>Notre objectif majeur est d&rsquo;accompagner les travaux de la Conf\u00e9d\u00e9ration dans l&rsquo;\u00e9laboration d&rsquo;une strat\u00e9gie nationale. Le Conseil f\u00e9d\u00e9ral a charg\u00e9 l&rsquo;Office f\u00e9d\u00e9ral de la sant\u00e9 publique (OFSP) d\u2019\u00e9laborer une strat\u00e9gie nationale accompagn\u00e9e d\u2019un plan d\u2019action, apr\u00e8s que la Conseill\u00e8re nationale Ruth Humbel a d\u00e9pos\u00e9 un postulat dans lequel elle demandait une intervention du Conseil f\u00e9d\u00e9ral.<\/p>\n<p><a href=\"http:\/\/wasipope.cyon.site\/wp-content\/uploads\/2024\/03\/POSITIONSPAPIER_IG-Seltene-Krankheiten_d_def.pdf\" target=\"_blank\" rel=\"noopener\">&gt; Prise de position (PDF)<\/a><\/p>\n<\/div><\/section><\/p><\/div><div  class='flex_column av-z0a1-6ad3b9efa5295544a801d31acce7403b av_one_third  avia-builder-el-8  el_after_av_two_third  avia-builder-el-last  flex_column_div  '     ><section  class='av_textblock_section av-lu2dhccm-2bad7ea52749ec4904857b9d180dfa40 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>Qui sommes-nous<\/strong><\/p>\n<p>La CI Maladies rares a \u00e9t\u00e9 fond\u00e9e en ao\u00fbt 2011. Elle b\u00e9n\u00e9ficie d&rsquo;un large soutien, ainsi que de l&rsquo;appui d&rsquo;importants acteurs de la politique suisse de la sant\u00e9. La conseill\u00e8re nationale Yvonne Feri et le conseiller aux Etats Matthias Michel sont les pr\u00e9sidents de la CI Maladies rares.<br \/>\nlire la suite<\/p>\n<p><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/qui-sommes-nous\/\">&gt; lire la suite<\/a><\/p>\n<\/div><\/section><\/div>\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-270","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/270","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/comments?post=270"}],"version-history":[{"count":6,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/270\/revisions"}],"predecessor-version":[{"id":271,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/270\/revisions\/271"}],"wp:attachment":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/media?parent=270"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}