{"id":263,"date":"2024-03-18T14:58:24","date_gmt":"2024-03-18T13:58:24","guid":{"rendered":"https:\/\/wasipope.cyon.site\/herausforderungen\/"},"modified":"2024-03-28T10:37:13","modified_gmt":"2024-03-28T09:37:13","slug":"defis","status":"publish","type":"page","link":"https:\/\/ig-seltene-krankheiten.ch\/fr\/defis\/","title":{"rendered":"D\u00e9fis"},"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-1zfxo-15ce038208cec129370531bdcc77e31a 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=\"#\" 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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-13xlk-020666d0a7eeb0decf08041bd682ddad 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-263'><div class='entry-content-wrapper clearfix'>\n<div  class='flex_column av-21mhg-320a12ba14b652038b53f38feec844fb 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-lu2cq8qv-282430c9f7d206cc7f57a6b6febf18d8 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h1>D\u00e9fis<\/h1>\n<\/div><\/section><br \/>\n<section  class='av_textblock_section av-lu2cqnoy-1ddea1b1e3545facfad225d106788d0b '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p>Avec les progr\u00e8s effectu\u00e9s dans le diagnostic des maladies rares et le d\u00e9veloppement de th\u00e9rapies appropri\u00e9s, le syst\u00e8me de sant\u00e9 se voit confront\u00e9 \u00e0 de nombreux d\u00e9fis. Un suivi optimal doit \u00eatre garanti au cas par cas. Le monde politique est appel\u00e9 \u00e0 r\u00e9agir. Il doit veiller \u00e0 ce que les progr\u00e8s m\u00e9dicaux effectu\u00e9s soient soutenus et utilis\u00e9s de mani\u00e8re cibl\u00e9e et efficace pour les patients.<\/p>\n<p><strong><br \/>\nUn plan d&rsquo;action national pour la Suisse<br \/>\n<\/strong>En Novembre 2010, la Conseill\u00e8re nationale Ruth Humbel a d\u00e9pos\u00e9 un postulat. Elle demandait au Conseil f\u00e9d\u00e9ral d\u2019\u00e9laborer une strat\u00e9gie nationale accompagn\u00e9e d\u2019un plan d\u2019action pour les maladies orphelines. Le Conseil f\u00e9d\u00e9ral a adopt\u00e9 ce postulat et charg\u00e9 l\u2019Office f\u00e9d\u00e9ral de la sant\u00e9 publique de formuler une proposition correspondante. La CI souhaite aider l\u2019administration dans son travail.<\/p>\n<p>Le postulat \u201eUne strat\u00e9gie nationale pour am\u00e9liorer la situation m\u00e9dicale des personnes souffrant de maladies rares\u00a0\u00bb d\u00e9pos\u00e9 par la Conseill\u00e8re nationale Ruth Humbel et portant 40 autres signatures demande:<\/p>\n<ul>\n<li>l&rsquo;uniformisation de la classification des maladies (ICD) et l&rsquo;enregistrement des cas m\u00e9dicaux dans une base de donn\u00e9es nationale\u00a0 afin de s&rsquo;assurer que le savoir acquis sur le diagnostic, l&rsquo;\u00e9volution et le traitement des maladies rares sera conserv\u00e9 et communiqu\u00e9 de mani\u00e8re optimale;<\/li>\n<li>la promotion d&rsquo;une collaboration optimale entre les diff\u00e9rents acteurs: sp\u00e9cialistes, responsables de l&rsquo;assurance-maladie de base, organisations de patients et instances comp\u00e9tentes du domaine de la sant\u00e9;<\/li>\n<li>la cr\u00e9ation de centres de comp\u00e9tences nationaux ou l&rsquo;appui de centres existants;<\/li>\n<li>la collaboration avec les centres et les r\u00e9seaux de r\u00e9f\u00e9rence europ\u00e9ens ou internationaux;<\/li>\n<li>l&rsquo;\u00e9galit\u00e9 de traitement dans l&rsquo;acc\u00e8s \u00e0 un diagnostic et \u00e0 une th\u00e9rapie efficaces;<\/li>\n<li>l&rsquo;am\u00e9lioration de la position des maladies rares dans l&rsquo;\u00e9chelle des priorit\u00e9s de la recherche fondamentale et de la recherche clinique.<\/li>\n<\/ul>\n<\/div><\/section><\/p><\/div><div  class='flex_column av-1cxac-0c781d0e443a924dd2711ad0464f96a0 av_one_third  avia-builder-el-6  el_after_av_two_third  avia-builder-el-last  flex_column_div  '     ><section  class='av_textblock_section av-x0g4-ec72101f2a76e9155386167fdd72647e '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>Maladies rares<\/strong><\/p>\n<p>A l&rsquo;heure actuelle, on estime qu&rsquo;il existe entre 7 000 et 8 000 maladies rares dans le monde. La plupart d&rsquo;entre elles sont difficiles \u00e0 diagnostiquer. On estime qu&rsquo;elles concernent plus de 30 millions de personnes rien qu&rsquo;en Europe.<\/p>\n<p><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/maladies-rares\/\">&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-263","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/263","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=263"}],"version-history":[{"count":4,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/263\/revisions"}],"predecessor-version":[{"id":495,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/263\/revisions\/495"}],"wp:attachment":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/media?parent=263"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}