{"id":277,"date":"2024-03-18T14:58:17","date_gmt":"2024-03-18T13:58:17","guid":{"rendered":"https:\/\/wasipope.cyon.site\/seltene-krankheiten\/"},"modified":"2024-03-28T10:36:34","modified_gmt":"2024-03-28T09:36:34","slug":"maladies-rares","status":"publish","type":"page","link":"https:\/\/ig-seltene-krankheiten.ch\/fr\/maladies-rares\/","title":{"rendered":"Maladies rares"},"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-2aj8m-9794c7260ba6565873f321c37ca182d7 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 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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-woeq-bf0855082bb413ebcc2780d190a90a92 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-277'><div class='entry-content-wrapper clearfix'>\n<div  class='flex_column av-1nyl2-42de64289c8388a2e4eb2766bb525dde 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-lu2c1n09-e65ee30c36bf915e0692d86a5b09ecd1 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h1>Maladies rares<\/h1>\n<\/div><\/section><br \/>\n<section  class='av_textblock_section av-lu2c25tg-7c4e6996301eb718dc9d6273ac1bc662 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h2>D\u00e9finitions<\/h2>\n<p>Une maladie rare se d\u00e9finit en fonction d&rsquo;un seuil admis, c&rsquo;est \u00e0 dire du nombre de personnes atteintes par cette maladie \u00e0 un moment donn\u00e9. En Suisse et au sein de l&rsquo;UE, une maladie est consid\u00e9r\u00e9e comme rare lorsqu&rsquo;elle ne touche pas plus de 5 personnes sur 10 000. 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. En Suisse, environ 620 000 personnes souffrent d&rsquo;une maladie rare &#8211; en Europe, on estime que plus de 30 millions de personnes sont concern\u00e9es. Le spectre des sympt\u00f4mes est tr\u00e8s large, il comprend des perturbations m\u00e9taboliques, du syst\u00e8me immunitaire et du syst\u00e8me sanguin ou des pathologies de certains tissus. Dans la majorit\u00e9 des cas, ces maladies sont d&rsquo;origine g\u00e9n\u00e9tique. Par cons\u00e9quent, cela signifie qu&rsquo;elles ne concernent pas uniquement les personnes malades, mais \u00e9galement les membres de leur famille. En r\u00e8gle g\u00e9n\u00e9rale, elles apparaissent d\u00e8s la naissance ou l&rsquo;enfance.<\/p>\n<p>Les maladies rares pr\u00e9sentent certaines caract\u00e9ristiques communes:<\/p>\n<ul>\n<li>de mani\u00e8re g\u00e9n\u00e9rale, les m\u00e9decins g\u00e9n\u00e9ralistes ne sont confront\u00e9s \u00e0 un cas de maladie rare qu&rsquo;une fois par an au maximum. Celles-ci ne leur sont donc pas famili\u00e8res, ce qui conduit fr\u00e9quemment \u00e0 des erreurs de diagnostic. Bien souvent, il faut attendre plusieurs ann\u00e9es avant que soit pos\u00e9 le diagnostic correct. Cela peut engendrer de grandes souffrances et, le cas \u00e9ch\u00e9ant, des frais \u00e9normes pour les patients.<\/li>\n<li>les maladies rares mettent souvent en jeu le pronostic vital du patient, elles peuvent impliquer une invalidit\u00e9 chronique ainsi qu&rsquo;un suivi sp\u00e9cialis\u00e9.<\/li>\n<li>les maladies rares sont souvent complexes \u00e0 diagnostiquer et \u00e0 traiter.<\/li>\n<\/ul>\n<\/div><\/section><\/p><\/div><div  class='flex_column av-15mee-2337411d84ee6ed3a9768207fb28a60b 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-lu2djtyd-dd44a9c608c5bd7512593489d1cebfc9 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>D\u00e9fis<\/strong><\/p>\n<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><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/defis\/\">&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-277","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/277","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=277"}],"version-history":[{"count":4,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/277\/revisions"}],"predecessor-version":[{"id":278,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/pages\/277\/revisions\/278"}],"wp:attachment":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/media?parent=277"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}