{"id":286,"date":"2024-03-18T14:58:47","date_gmt":"2024-03-18T13:58:47","guid":{"rendered":"https:\/\/wasipope.cyon.site\/news\/"},"modified":"2024-03-25T16:40:53","modified_gmt":"2024-03-25T15:40:53","slug":"news","status":"publish","type":"page","link":"https:\/\/ig-seltene-krankheiten.ch\/fr\/news\/","title":{"rendered":"Actualit\u00e9s"},"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-2at9w-a3f2271ebd154c81b4544a32fddee033 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-28ovw-24de3d19202e25f067f93284fcb080e6 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-286'><div class='entry-content-wrapper clearfix'>\n<div  class='flex_column av-1hhes-76bef15d288c5e4d5222d4f86988d9b1 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-lu2dw3nq-0b08db2019a0ec52ef2da0c0a0cfb8a0 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h1>Actualit\u00e9s<\/h1>\n<\/div><\/section><br \/>\n<div  class='av-alb-blogposts template-blog  av-blog-meta-author-disabled av-blog-meta-comments-disabled av-blog-meta-category-disabled av-blog-meta-html-info-disabled av-blog-meta-tag-disabled '  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Blog\" ><article class=\"post-entry post-entry-type-standard post-entry-756 post-loop-1 post-parity-odd bloglist-excerpt  post-756 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2026\/03\/23\/stellungnahme-zur-umsetzung-der-pa-iv-roduit\/\" rel=\"bookmark\" title=\"Lien permanent : Prise de position concernant la mise en \u0153uvre de l&rsquo;initiative parlementaire Roduit. Mise en \u0153uvre du rapport d&rsquo;\u00e9valuation de l&rsquo;expertise m\u00e9dicale dans le domaine de l&rsquo;AI\">Prise de position concernant la mise en \u0153uvre de l&rsquo;initiative parlementaire Roduit. Mise en \u0153uvre du rapport d&rsquo;\u00e9valuation de l&rsquo;expertise m\u00e9dicale dans le domaine de l&rsquo;AI<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2026-03-23T16:35:35+01:00\" >23. mars 2026<\/time><\/span><p>La CI Maladies rares salue la mise en place d&rsquo;une proc\u00e9dure de concertation pour les expertises monodisciplinaires dans le domaine de l&rsquo;AI. Les personnes atteintes de maladies rares ont tout particuli\u00e8rement \u00e0 c\u0153ur de pouvoir participer d\u00e8s le d\u00e9but au choix de la personne charg\u00e9e de r\u00e9aliser l&rsquo;expertise, d&rsquo;autant plus que les professionnels de sant\u00e9 ne disposent souvent pas des connaissances n\u00e9cessaires sur la maladie en raison de sa raret\u00e9 et de sa complexit\u00e9.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2026\/03\/23\/stellungnahme-zur-umsetzung-der-pa-iv-roduit\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2026-03-23T16:35:35+01:00\" >2026-03-23 16:35:35<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2026-03-23 16:38:29<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Prise de position concernant la mise en \u0153uvre de l&rsquo;initiative parlementaire Roduit. Mise en \u0153uvre du rapport d&rsquo;\u00e9valuation de l&rsquo;expertise m\u00e9dicale dans le domaine de l&rsquo;AI<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-735 post-loop-2 post-parity-even bloglist-excerpt  post-735 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2025\/04\/15\/rare-disease-day-2025\/\" rel=\"bookmark\" title=\"Lien permanent : Rare Disease Day 2025\">Rare Disease Day 2025<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2025-04-15T15:22:14+02:00\" >15. avril 2025<\/time><\/span><p>Die j\u00e4hrliche Tagung von ProRaris zum Rare Disease Day fand dieses Jahr am 1. M\u00e4rz 2025 in Luzern statt. Zentrales Thema war der Einbezug von Patientinnen und Patienten in die Versorgung. Als Zweitthema waren sehr seltene Krankheiten diskutiert.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2025\/04\/15\/rare-disease-day-2025\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2025-04-15T15:22:14+02:00\" >2025-04-15 15:22:14<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2025-04-15 15:22:14<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Rare Disease Day 2025<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-605 post-loop-3 post-parity-odd bloglist-excerpt  post-605 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2024\/05\/06\/rare-disease-day-2024-2\/\" rel=\"bookmark\" title=\"Lien permanent : R\u00e9ponse \u00e0 la consultation sur la r\u00e9vision partielle de la loi sur les produits th\u00e9rapeutiques (LPTh)\">R\u00e9ponse \u00e0 la consultation sur la r\u00e9vision partielle de la loi sur les produits th\u00e9rapeutiques (LPTh)<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2024-05-06T15:46:08+02:00\" >6. mai 2024<\/time><\/span><p>Die IG Seltene Krankheiten (IGSK) begr\u00fcsst die Revision des Heilmittelgesetzes. Insbesondere die \u00c4nderungen bei den neuartigen Therapien, den sogenannten Advanced Therapy Medicinal Products (ATMP), betreffen zentrale Interessen von Betroffenen mit seltenen Krankheiten.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2024\/05\/06\/rare-disease-day-2024-2\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2024-05-06T15:46:08+02:00\" >2024-05-06 15:46:08<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-06 15:47:29<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>R\u00e9ponse \u00e0 la consultation sur la r\u00e9vision partielle de la loi sur les produits th\u00e9rapeutiques (LPTh)<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-471 post-loop-4 post-parity-even bloglist-excerpt  post-471 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2024\/03\/27\/rare-disease-day-2024\/\" rel=\"bookmark\" title=\"Lien permanent : Rare Disease Day 2024\">Rare Disease Day 2024<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2024-03-27T16:05:07+01:00\" >27. mars 2024<\/time><\/span><p>Le 2 mars 2024, la 14e Journ\u00e9e internationale des maladies rares a eu lieu \u00e0 l&rsquo;H\u00f4pital de l&rsquo;\u00cele \u00e0 Berne. L&rsquo;\u00e9v\u00e9nement de cette ann\u00e9e a \u00e9t\u00e9 organis\u00e9 par ProRaris en collaboration avec le Centre des maladies rares de l&rsquo;H\u00f4pital de l&rsquo;\u00cele \u00e0 Berne.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2024\/03\/27\/rare-disease-day-2024\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>irina.kuchynka<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>irina.kuchynka<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2024-03-27T16:05:07+01:00\" >2024-03-27 16:05:07<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-04-03 13:29:26<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Rare Disease Day 2024<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-306 post-loop-5 post-parity-odd bloglist-excerpt  post-306 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2023\/03\/28\/rare-disease-day-2023\/\" rel=\"bookmark\" title=\"Lien permanent : Rare Disease Day 2023\">Rare Disease Day 2023<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2023-03-28T15:20:23+02:00\" >28. mars 2023<\/time><\/span><p>Le 4 mars 2023, la 13e Journ\u00e9e internationale des maladies rares a eu lieu virtuellement sur le th\u00e8me de l&rsquo;implication des patients dans la recherche clinique et les soins de sant\u00e9 : \u00ab\u00a0D\u00e9fis et opportunit\u00e9s\u00a0\u00bb.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2023\/03\/28\/rare-disease-day-2023\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2023-03-28T15:20:23+02:00\" >2023-03-28 15:20:23<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-06 15:50:46<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Rare Disease Day 2023<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-321 post-loop-6 post-parity-even bloglist-excerpt  post-321 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/10\/17\/position-commune-sur-la-revision-de-la-prise-en-charge-dans-des-cas-particuliers-oamal-art-71a-d\/\" rel=\"bookmark\" title=\"Lien permanent : Position commune sur la r\u00e9vision de la prise en charge dans des cas particuliers (OAMal, art. 71a-d)\">Position commune sur la r\u00e9vision de la prise en charge dans des cas particuliers (OAMal, art. 71a-d)<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-10-17T10:18:14+02:00\" >17. octobre 2022<\/time><\/span><p>La CI Maladies rares et 20 organisations rejettent la r\u00e9vision propos\u00e9e par le Conseil f\u00e9d\u00e9ral concernant le remboursement au cas par cas et offrent en m\u00eame temps leur soutien pour l&rsquo;\u00e9laboration commune d&rsquo;un nouveau projet.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/10\/17\/position-commune-sur-la-revision-de-la-prise-en-charge-dans-des-cas-particuliers-oamal-art-71a-d\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-10-17T10:18:14+02:00\" >2022-10-17 10:18:14<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 15:48:07<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Position commune sur la r\u00e9vision de la prise en charge dans des cas particuliers (OAMal, art. 71a-d)<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-324 post-loop-7 post-parity-odd bloglist-excerpt  post-324 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/09\/30\/la-revision-du-remboursement-au-cas-par-cas-entrainerait-une-deterioration-massive-de-la-situation-en-matiere-de-soins-pour-les-personnes-atteintes-de-maladies-rares\/\" rel=\"bookmark\" title=\"Lien permanent : La r\u00e9vision du remboursement au cas par cas entra\u00eenerait une d\u00e9t\u00e9rioration massive de la situation en mati\u00e8re de soins pour les personnes atteintes de maladies rares.\">La r\u00e9vision du remboursement au cas par cas entra\u00eenerait une d\u00e9t\u00e9rioration massive de la situation en mati\u00e8re de soins pour les personnes atteintes de maladies rares.<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-09-30T10:18:55+02:00\" >30. septembre 2022<\/time><\/span><p>La r\u00e9vision propos\u00e9e du remboursement au cas par cas passe totalement \u00e0 c\u00f4t\u00e9 de la r\u00e9alit\u00e9 des patientes et patients atteints de maladies rares. La CI Maladies rares rejette donc les modifications pr\u00e9vues de l&rsquo;ordonnance sur l&rsquo;assurance-maladie (OAMal) et de l&rsquo;ordonnance sur les prestations de l&rsquo;assurance des soins (OPAS) en ce qui concerne l&rsquo;art. 71a-d OAMal et l&rsquo;art. 38a-e OPAS.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/09\/30\/la-revision-du-remboursement-au-cas-par-cas-entrainerait-une-deterioration-massive-de-la-situation-en-matiere-de-soins-pour-les-personnes-atteintes-de-maladies-rares\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-09-30T10:18:55+02:00\" >2022-09-30 10:18:55<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 15:52:08<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>La r\u00e9vision du remboursement au cas par cas entra\u00eenerait une d\u00e9t\u00e9rioration massive de la situation en mati\u00e8re de soins pour les personnes atteintes de maladies rares.<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-327 post-loop-8 post-parity-even bloglist-excerpt  post-327 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/09\/14\/le-nouveau-site-web-du-registre-suisse-des-maladies-rares-est-en-ligne\/\" rel=\"bookmark\" title=\"Lien permanent : Le nouveau site web du Registre suisse des maladies rares est en ligne\">Le nouveau site web du Registre suisse des maladies rares est en ligne<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-09-14T10:24:05+02:00\" >14. septembre 2022<\/time><\/span><p>Le Registre suisse des maladies rares (RSMR) recueille des informations sur les personnes atteintes d&rsquo;une maladie rare dans toute la Suisse. Ce projet vise \u00e0 d\u00e9crire la fr\u00e9quence des maladies rares en Suisse, \u00e0 promouvoir la recherche sur les maladies rares et \u00e0 faciliter une mise en r\u00e9seau entre les personnes concern\u00e9es et les sp\u00e9cialistes.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/09\/14\/le-nouveau-site-web-du-registre-suisse-des-maladies-rares-est-en-ligne\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-09-14T10:24:05+02:00\" >2022-09-14 10:24:05<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 09:56:59<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Le nouveau site web du Registre suisse des maladies rares est en ligne<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-334 post-loop-9 post-parity-odd bloglist-excerpt  post-334 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/06\/22\/yvonne-feri-et-matthias-michel-sont-les-nouveaux-presidents-de-la-ci-maladies-rares\/\" rel=\"bookmark\" title=\"Lien permanent : Yvonne Feri et Matthias Michel sont les nouveaux pr\u00e9sidents de la CI Maladies rares\">Yvonne Feri et Matthias Michel sont les nouveaux pr\u00e9sidents de la CI Maladies rares<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-06-22T10:26:06+02:00\" >22. juin 2022<\/time><\/span><p>Lors de leur r\u00e9union annuelle du 22 juin 2022, les organismes responsables de la CI Maladies rares ont \u00e9lu la conseill\u00e8re nationale argovienne Yvonne Feri et le conseiller aux Etats zougois Matthias Michel comme nouveaux co-pr\u00e9sidents. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/06\/22\/yvonne-feri-et-matthias-michel-sont-les-nouveaux-presidents-de-la-ci-maladies-rares\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-06-22T10:26:06+02:00\" >2022-06-22 10:26:06<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 15:55:21<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Yvonne Feri et Matthias Michel sont les nouveaux pr\u00e9sidents de la CI Maladies rares<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-338 post-loop-10 post-parity-even bloglist-excerpt  post-338 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/06\/21\/le-conseil-national-adopte-deux-motions-sur-les-maladies-rares\/\" rel=\"bookmark\" title=\"Lien permanent : Le Conseil national adopte deux motions sur les maladies rares\">Le Conseil national adopte deux motions sur les maladies rares<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-06-21T10:36:25+02:00\" >21. juin 2022<\/time><\/span><p>Le 1er juin 2022, le Conseil national a adopt\u00e9 deux motions visant \u00e0 am\u00e9liorer la situation des personnes concern\u00e9es par les maladies rares. La motion 21.3978 \u00ab Financement durable de projets de sant\u00e9 publique du Concept national maladies rares \u00bb n&rsquo;a pas \u00e9t\u00e9 contest\u00e9e par la Grande Chambre ni par le Conseil f\u00e9d\u00e9ral. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/06\/21\/le-conseil-national-adopte-deux-motions-sur-les-maladies-rares\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-06-21T10:36:25+02:00\" >2022-06-21 10:36:25<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:02:43<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Le Conseil national adopte deux motions sur les maladies rares<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-341 post-loop-11 post-parity-odd bloglist-excerpt  post-341 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/03\/24\/la-necessite-dagir-dans-le-domaine-des-maladies-rares-thematisee-lors-de-la-session-parlementaire-de-printemps\/\" rel=\"bookmark\" title=\"Lien permanent : La n\u00e9cessit\u00e9 d&rsquo;agir dans le domaine des maladies rares th\u00e9matis\u00e9e lors de la session parlementaire de printemps\">La n\u00e9cessit\u00e9 d&rsquo;agir dans le domaine des maladies rares th\u00e9matis\u00e9e lors de la session parlementaire de printemps<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-03-24T10:37:18+01:00\" >24. mars 2022<\/time><\/span><p>La conseill\u00e8re nationale Yvonne Feri (PS\/AG) a d\u00e9pos\u00e9 une interpellation sur le th\u00e8me \u00ab\u00a0Acc\u00e8s aux m\u00e9dicaments orphelins\u00a0\u00bb. Dans son intervention, elle critique les processus mal coordonn\u00e9s de l&rsquo;autorisation de Swissmedic et du remboursement via la liste des sp\u00e9cialit\u00e9s (LS) et les retards qui en r\u00e9sultent pour l&rsquo;acc\u00e8s aux m\u00e9dicaments orphelins. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/03\/24\/la-necessite-dagir-dans-le-domaine-des-maladies-rares-thematisee-lors-de-la-session-parlementaire-de-printemps\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-03-24T10:37:18+01:00\" >2022-03-24 10:37:18<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:04:47<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>La n\u00e9cessit\u00e9 d&rsquo;agir dans le domaine des maladies rares th\u00e9matis\u00e9e lors de la session parlementaire de printemps<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-345 post-loop-12 post-parity-even bloglist-excerpt  post-345 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/03\/21\/rare-disease-day-2022\/\" rel=\"bookmark\" title=\"Lien permanent : Rare Disease Day 2022\">Rare Disease Day 2022<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-03-21T10:43:35+01:00\" >21. mars 2022<\/time><\/span><p>Pour la deuxi\u00e8me ann\u00e9e cons\u00e9cutive, la 12e Journ\u00e9e internationale des maladies rares a \u00e9t\u00e9 organis\u00e9e sous forme de conf\u00e9rence virtuelle. Vous trouverez ici notre r\u00e9sum\u00e9. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/03\/21\/rare-disease-day-2022\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-03-21T10:43:35+01:00\" >2022-03-21 10:43:35<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 15:58:28<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Rare Disease Day 2022<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-348 post-loop-13 post-parity-odd bloglist-excerpt  post-348 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/01\/10\/la-pression-monte-pour-une-mise-en-oeuvre-durable-du-cnmr\/\" rel=\"bookmark\" title=\"Lien permanent : La pression monte pour une mise en \u0153uvre durable du CNMR\">La pression monte pour une mise en \u0153uvre durable du CNMR<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2022-01-10T10:54:59+01:00\" >10. janvier 2022<\/time><\/span><p>Dans une motion d\u00e9pos\u00e9e en septembre 2021, la Commission de la sant\u00e9 du Conseil des Etats charge le Conseil f\u00e9d\u00e9ral de cr\u00e9er une base l\u00e9gale pour la mise en \u0153uvre des mesures du concept national maladies rares CNMR.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2022\/01\/10\/la-pression-monte-pour-une-mise-en-oeuvre-durable-du-cnmr\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2022-01-10T10:54:59+01:00\" >2022-01-10 10:54:59<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:10:56<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>La pression monte pour une mise en \u0153uvre durable du CNMR<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-355 post-loop-14 post-parity-even bloglist-excerpt  post-355 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2021\/03\/18\/reponse-a-la-consultation-ai-dispositions-de-lordonnance\/\" rel=\"bookmark\" title=\"Lien permanent : R\u00e9ponse \u00e0 la consultation AI : Dispositions de l&rsquo;ordonnance\">R\u00e9ponse \u00e0 la consultation AI : Dispositions de l&rsquo;ordonnance<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2021-03-18T10:55:49+01:00\" >18. mars 2021<\/time><\/span><p>M\u00eame si diverses am\u00e9liorations ont maintenant \u00e9t\u00e9 apport\u00e9es, les adaptations et les locaux essentiels n&rsquo;ont pas \u00e9t\u00e9 inclus dans les dispositions d&rsquo;application, contrairement aux d\u00e9lib\u00e9rations du Parlement. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2021\/03\/18\/reponse-a-la-consultation-ai-dispositions-de-lordonnance\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2021-03-18T10:55:49+01:00\" >2021-03-18 10:55:49<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 16:01:41<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>R\u00e9ponse \u00e0 la consultation AI : Dispositions de l&rsquo;ordonnance<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-361 post-loop-15 post-parity-odd bloglist-excerpt  post-361 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2021\/03\/06\/rare-disease-day-2021-par-visioconference\/\" rel=\"bookmark\" title=\"Lien permanent : Rare Disease Day 2021 par Visioconf\u00e9rence\">Rare Disease Day 2021 par Visioconf\u00e9rence<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2021-03-06T10:57:12+01:00\" >6. mars 2021<\/time><\/span><p>En raison de la pand\u00e9mie, la 11\u00e8me Journ\u00e9e internationale des maladies rares en Suisse s&rsquo;est tenue virtuellement.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2021\/03\/06\/rare-disease-day-2021-par-visioconference\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2021-03-06T10:57:12+01:00\" >2021-03-06 10:57:12<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:38:14<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Rare Disease Day 2021 par Visioconf\u00e9rence<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-364 post-loop-16 post-parity-even bloglist-excerpt  post-364 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2021\/02\/17\/rapport-du-conseil-federal-donnant-suite-aux-postulat-18-3040\/\" rel=\"bookmark\" title=\"Lien permanent : Rapport du Conseil f\u00e9d\u00e9ral donnant suite aux postulat 18.3040\">Rapport du Conseil f\u00e9d\u00e9ral donnant suite aux postulat 18.3040<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2021-02-17T11:00:41+01:00\" >17. f\u00e9vrier 2021<\/time><\/span><p>Le rapport adopt\u00e9 par le Conseil f\u00e9d\u00e9ral, qui fait suite \u00e0 un postulat de la Commission de la s\u00e9curit\u00e9 sociale et de la sant\u00e9 publique du Conseil national (CSSS-N), examine les modifications l\u00e9gales et le cadre financier n\u00e9cessaires pour am\u00e9liorer la fourniture des soins dans le domaine des maladies rares.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2021\/02\/17\/rapport-du-conseil-federal-donnant-suite-aux-postulat-18-3040\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2021-02-17T11:00:41+01:00\" >2021-02-17 11:00:41<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:41:02<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Rapport du Conseil f\u00e9d\u00e9ral donnant suite aux postulat 18.3040<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-368 post-loop-17 post-parity-odd bloglist-excerpt  post-368 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/11\/18\/reponse-a-la-consultation-sur-le-paquet-de-mesures-de-maitrise-des-couts-2\/\" rel=\"bookmark\" title=\"Lien permanent : R\u00e9ponse \u00e0 la consultation sur le paquet de mesures de ma\u00eetrise des co\u00fbts 2\">R\u00e9ponse \u00e0 la consultation sur le paquet de mesures de ma\u00eetrise des co\u00fbts 2<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2020-11-18T11:03:24+01:00\" >18. novembre 2020<\/time><\/span><p>En principe, la CIMR soutient l&rsquo;objectif des mesures propos\u00e9es visant \u00e0 freiner l&rsquo;augmentation des co\u00fbts du syst\u00e8me de sant\u00e9. Toutefois, en fonction de la formulation de certains changements l\u00e9gislatifs, il existe un risque que les mesures aient un impact n\u00e9gatif sur la situation des personnes atteintes de maladies rares. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/11\/18\/reponse-a-la-consultation-sur-le-paquet-de-mesures-de-maitrise-des-couts-2\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2020-11-18T11:03:24+01:00\" >2020-11-18 11:03:24<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 16:05:30<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>R\u00e9ponse \u00e0 la consultation sur le paquet de mesures de ma\u00eetrise des co\u00fbts 2<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-372 post-loop-18 post-parity-even bloglist-excerpt  post-372 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/10\/07\/verbesserungen-fur-betreuende-angehorige-gesetz-wird-per-1-januar-und-per-1-juli-2021-angepasst\/\" rel=\"bookmark\" title=\"Lien permanent : Am\u00e9liorations pour les proches aidants : la loi sera modifi\u00e9e le 1er janvier et le 1er juillet 2021\">Am\u00e9liorations pour les proches aidants : la loi sera modifi\u00e9e le 1er janvier et le 1er juillet 2021<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2020-10-07T11:04:42+02:00\" >7. octobre 2020<\/time><\/span><p>La nouvelle loi f\u00e9d\u00e9rale sur l\u2019am\u00e9lioration de la conciliation entre activit\u00e9 professionnelle et prise en charge de proches entrera en vigueur en deux \u00e9tapes.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/10\/07\/verbesserungen-fur-betreuende-angehorige-gesetz-wird-per-1-januar-und-per-1-juli-2021-angepasst\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2020-10-07T11:04:42+02:00\" >2020-10-07 11:04:42<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:44:43<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Am\u00e9liorations pour les proches aidants : la loi sera modifi\u00e9e le 1er janvier et le 1er juillet 2021<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-376 post-loop-19 post-parity-odd bloglist-excerpt  post-376 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/10\/01\/kmsk-livres-de-savoir-en-allemand\/\" rel=\"bookmark\" title=\"Lien permanent : KMSK livres de savoir (en allemand)\">KMSK livres de savoir (en allemand)<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2020-10-01T11:08:47+02:00\" >1. octobre 2020<\/time><\/span><p>La KMSK, une association pour les enfants atteints de maladies rares, a publi\u00e9 son troisi\u00e8me livre de savoir.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/10\/01\/kmsk-livres-de-savoir-en-allemand\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2020-10-01T11:08:47+02:00\" >2020-10-01 11:08:47<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-08 09:16:22<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>KMSK livres de savoir (en allemand)<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-379 post-loop-20 post-parity-even bloglist-excerpt  post-379 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/08\/09\/les-6-premiers-centres-pour-maladies-rares\/\" rel=\"bookmark\" title=\"Lien permanent : Les 6 premiers centres pour maladies rares\">Les 6 premiers centres pour maladies rares<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2020-08-09T11:06:01+02:00\" >9. ao\u00fbt 2020<\/time><\/span><p>Les Centres pour maladies rares sont des points de contact interdisciplinaires vers lesquels les patient-e-s dont le diagnostic n&rsquo;est pas clair peuvent se tourner pour obtenir des pr\u00e9cisions et un diagnostic plus pr\u00e9cis. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/08\/09\/les-6-premiers-centres-pour-maladies-rares\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2020-08-09T11:06:01+02:00\" >2020-08-09 11:06:01<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 16:12:09<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Les 6 premiers centres pour maladies rares<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-383 post-loop-21 post-parity-odd bloglist-excerpt  post-383 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/06\/19\/revision-de-lai-adoptee-au-parlement\/\" rel=\"bookmark\" title=\"Lien permanent : R\u00e9vision de l\u2019AI adopt\u00e9e au parlement\">R\u00e9vision de l\u2019AI adopt\u00e9e au parlement<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2020-06-19T11:10:23+02:00\" >19. juin 2020<\/time><\/span><p>Lors de la session d&rsquo;\u00e9t\u00e9 2020, les deux Conseils ont approuv\u00e9 le d\u00e9veloppement continue de l\u2019AI. Avec la d\u00e9cision finale de la r\u00e9vision de l\u2019AI, la liste des maladies cong\u00e9nitales (liste des infirmit\u00e9s cong\u00e9nitales) sera d\u00e9sormais mise \u00e0 jour pour inclure les maladies rares.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2020\/06\/19\/revision-de-lai-adoptee-au-parlement\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2020-06-19T11:10:23+02:00\" >2020-06-19 11:10:23<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:50:54<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>R\u00e9vision de l\u2019AI adopt\u00e9e au parlement<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-387 post-loop-22 post-parity-even bloglist-excerpt  post-387 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2019\/12\/04\/le-conseil-federal-veut-soutenir-les-personnes-actives-soccupant-de-proches-malades\/\" rel=\"bookmark\" title=\"Lien permanent : Le Conseil f\u00e9d\u00e9ral veut soutenir les personnes actives s\u2019occupant de proches malades\">Le Conseil f\u00e9d\u00e9ral veut soutenir les personnes actives s\u2019occupant de proches malades<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2019-12-04T10:38:10+01:00\" >4. d\u00e9cembre 2019<\/time><\/span><p>Lors de sa s\u00e9ance du 22 mai 2019, le Conseil f\u00e9d\u00e9ral a transmis au Parlement le message relatif \u00e0 la Loi f\u00e9d\u00e9rale sur l\u2019am\u00e9lioration de la conciliation entre activit\u00e9 professionnelle et prise en charge de proches.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2019\/12\/04\/le-conseil-federal-veut-soutenir-les-personnes-actives-soccupant-de-proches-malades\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2019-12-04T10:38:10+01:00\" >2019-12-04 10:38:10<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:55:26<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Le Conseil f\u00e9d\u00e9ral veut soutenir les personnes actives s\u2019occupant de proches malades<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-432 post-loop-23 post-parity-odd bloglist-excerpt  post-432 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2019\/09\/25\/tenir-compte-des-particularites-de-la-medecine-pediatrique-et-de-la-medecine-des-adolescents\/\" rel=\"bookmark\" title=\"Lien permanent : Tenir compte des particularit\u00e9s de la m\u00e9decine p\u00e9diatrique et de la m\u00e9decine des adolescents\">Tenir compte des particularit\u00e9s de la m\u00e9decine p\u00e9diatrique et de la m\u00e9decine des adolescents<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2019-09-25T10:40:01+02:00\" >25. septembre 2019<\/time><\/span><p>Les politiciens de gauche \u00e0 droite exigent de meilleures conditions pour les p\u00e9diatres et les h\u00f4pitaux.<br \/>\n Plusieurs avanc\u00e9es de la session d&rsquo;automne sont consacr\u00e9es aux plus jeunes patients et \u00e0 ceux qui les soignent.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2019\/09\/25\/tenir-compte-des-particularites-de-la-medecine-pediatrique-et-de-la-medecine-des-adolescents\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2019-09-25T10:40:01+02:00\" >2019-09-25 10:40:01<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:42:49<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Tenir compte des particularit\u00e9s de la m\u00e9decine p\u00e9diatrique et de la m\u00e9decine des adolescents<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-428 post-loop-24 post-parity-even bloglist-excerpt  post-428 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/11\/13\/proches-aidants-prise-de-position-dans-la-consultation\/\" rel=\"bookmark\" title=\"Lien permanent : Proches aidants : prise de position dans la consultation\">Proches aidants : prise de position dans la consultation<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2018-11-13T10:41:37+01:00\" >13. novembre 2018<\/time><\/span><p>La majorit\u00e9 des proches de patients atteints de maladies rares interrompent en moins temporairement leur carri\u00e8re, voire l&rsquo;arr\u00eatent compl\u00e8tement, en raison de l&rsquo;\u00e9quilibre souvent difficile \u00e0 trouver entre le travail et les soins aux proches.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/11\/13\/proches-aidants-prise-de-position-dans-la-consultation\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2018-11-13T10:41:37+01:00\" >2018-11-13 10:41:37<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 16:15:08<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Proches aidants : prise de position dans la consultation<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-424 post-loop-25 post-parity-odd bloglist-excerpt  post-424 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/05\/28\/schweizer-register-fur-seltene-krankheiten-srsk\/\" rel=\"bookmark\" title=\"Lien permanent : Registre suisse des maladies rares (RSMR)\">Registre suisse des maladies rares (RSMR)<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2018-05-28T10:43:26+02:00\" >28. mai 2018<\/time><\/span><p>La mesure n\u00b0 17 du concept national maladies rares pr\u00e9voit l\u2019\u00e9tablissement de registres. Fin 2016, l\u2019Office f\u00e9d\u00e9ral de la sant\u00e9 publique (OFSP) a charg\u00e9 l\u2019ISPM de planifier en d\u00e9tail le projet de RSMR afin de disposer d\u2019une base fiable permettant de mettre au point un registre exploitable et efficient.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/05\/28\/schweizer-register-fur-seltene-krankheiten-srsk\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2018-05-28T10:43:26+02:00\" >2018-05-28 10:43:26<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:33:25<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Registre suisse des maladies rares (RSMR)<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-420 post-loop-26 post-parity-even bloglist-excerpt  post-420 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/05\/03\/reseau-pour-les-maladies-rares-et-inexpliquees-de-lenfance-et-de-ladulte\/\" rel=\"bookmark\" title=\"Lien permanent : R\u00e9seau pour les maladies rares et inexpliqu\u00e9es de l&rsquo;enfance et de l&rsquo;adulte\">R\u00e9seau pour les maladies rares et inexpliqu\u00e9es de l&rsquo;enfance et de l&rsquo;adulte<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2018-05-03T11:00:03+02:00\" >3. mai 2018<\/time><\/span><p>Cinq h\u00f4pitaux &#8211; l&rsquo;h\u00f4pital cantonal d&rsquo;Aarau (KSA), l&rsquo;h\u00f4pital cantonal de B\u00e2le-Campagne (KSBL), l&rsquo;h\u00f4pital cantonal de Lucerne (LUKS), l\u2019h\u00f4pital universitaire p\u00e9diatrique des deux B\u00e2le (UKBB) et l&rsquo;h\u00f4pital universitaire de B\u00e2le (USB) &#8211; lancent le r\u00e9seau \u00ab\u00a0Maladies rares du nord-ouest et du centre de la Suisse\u00a0\u00bb.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/05\/03\/reseau-pour-les-maladies-rares-et-inexpliquees-de-lenfance-et-de-ladulte\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2018-05-03T11:00:03+02:00\" >2018-05-03 11:00:03<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:28:19<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>R\u00e9seau pour les maladies rares et inexpliqu\u00e9es de l&rsquo;enfance et de l&rsquo;adulte<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-416 post-loop-27 post-parity-odd bloglist-excerpt  post-416 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/02\/23\/bases-legales-visant-a-garantir-la-fourniture-des-soins-dans-le-domaine-des-maladies-rares\/\" rel=\"bookmark\" title=\"Lien permanent : Bases l\u00e9gales visant \u00e0 garantir la fourniture des soins dans le domaine des maladies rares\">Bases l\u00e9gales visant \u00e0 garantir la fourniture des soins dans le domaine des maladies rares<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2018-02-23T11:01:54+01:00\" >23. f\u00e9vrier 2018<\/time><\/span><p>La Commission de la S\u00e9curite Sociale et de la Sant\u00e9 publique du Conseil National (CSSS-N) soumet un postulat chargeant le Conseil f\u00e9d\u00e9ral d&rsquo;\u00e9tablir un rapport dans lequel il indiquera quels sont les modifications l\u00e9gales et le cadre financier n\u00e9cessaires pour pouvoir am\u00e9liorer la fourniture des soins dans le domaine des maladies rares.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/02\/23\/bases-legales-visant-a-garantir-la-fourniture-des-soins-dans-le-domaine-des-maladies-rares\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2018-02-23T11:01:54+01:00\" >2018-02-23 11:01:54<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:26:44<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Bases l\u00e9gales visant \u00e0 garantir la fourniture des soins dans le domaine des maladies rares<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-412 post-loop-28 post-parity-even bloglist-excerpt  post-412 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2017\/06\/22\/fondation-dune-association-de-coordination-des-maladies-rares\/\" rel=\"bookmark\" title=\"Lien permanent : Fondation d\u2019une association de coordination des maladies rares\">Fondation d\u2019une association de coordination des maladies rares<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2017-06-22T11:03:04+02:00\" >22. juin 2017<\/time><\/span><p>Les principaux acteurs du domaine de la sant\u00e9 ont fond\u00e9 la Coordination nationale des maladies rares (kosek).<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2017\/06\/22\/fondation-dune-association-de-coordination-des-maladies-rares\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2017-06-22T11:03:04+02:00\" >2017-06-22 11:03:04<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:25:00<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Fondation d\u2019une association de coordination des maladies rares<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-408 post-loop-29 post-parity-odd bloglist-excerpt  post-408 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2017\/03\/22\/anpassung-tarmed\/\" rel=\"bookmark\" title=\"Lien permanent : Adaptation TARMED\">Adaptation TARMED<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2017-03-22T11:04:27+01:00\" >22. mars 2017<\/time><\/span><p>Avec la pr\u00e9sente modification de l\u2019ordonnance, la structure tarifaire pour les prestations m\u00e9dicales, qui a besoin d\u2019une r\u00e9vision, est adapt\u00e9e suite \u00e0 l\u2019\u00e9chec des n\u00e9gociations entre les partenaires tarifaires. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2017\/03\/22\/anpassung-tarmed\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2017-03-22T11:04:27+01:00\" >2017-03-22 11:04:27<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:06:05<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Adaptation TARMED<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-403 post-loop-30 post-parity-even bloglist-excerpt  post-403 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2016\/10\/23\/fondation-piattaforma-malattie-rare-svizzera-italiana\/\" rel=\"bookmark\" title=\"Lien permanent : Fondation Piattaforma Malattie Rare Svizzera Italiana\">Fondation Piattaforma Malattie Rare Svizzera Italiana<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2016-10-23T11:05:49+02:00\" >23. octobre 2016<\/time><\/span><p>La Plateforme Maladies Rares Suisse italienne (PMRSi) a pour objectif de soutenir la mise en \u0153uvre du concept national maladies rares en Suisse italienne, de sensibiliser les acteurs nationaux aux sp\u00e9cificit\u00e9s de la Suisse italienne<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2016\/10\/23\/fondation-piattaforma-malattie-rare-svizzera-italiana\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2016-10-23T11:05:49+02:00\" >2016-10-23 11:05:49<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:04:13<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Fondation Piattaforma Malattie Rare Svizzera Italiana<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-399 post-loop-31 post-parity-odd bloglist-excerpt  post-399 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2016\/03\/02\/consultation-sur-le-developpement-continu-de-lassurance-invalidite-ai\/\" rel=\"bookmark\" title=\"Lien permanent : Consultation sur le d\u00e9veloppement continu de l\u2019assurance-invalidit\u00e9 AI\">Consultation sur le d\u00e9veloppement continu de l\u2019assurance-invalidit\u00e9 AI<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2016-03-02T11:13:06+01:00\" >2. mars 2016<\/time><\/span><p>La CI Maladies Rares (CIMR) rejette la r\u00e9vision de la liste des infirmit\u00e9s cong\u00e9nitales dans sa forme actuelle, car elle est insuffisante et certaines formulations posent probl\u00e8me.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2016\/03\/02\/consultation-sur-le-developpement-continu-de-lassurance-invalidite-ai\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2016-03-02T11:13:06+01:00\" >2016-03-02 11:13:06<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 11:02:24<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Consultation sur le d\u00e9veloppement continu de l\u2019assurance-invalidit\u00e9 AI<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-395 post-loop-32 post-parity-even bloglist-excerpt  post-395 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/10\/15\/ein-konzept-fur-seltene-krankheiten\/\" rel=\"bookmark\" title=\"Lien permanent : Concept national maladies rares\">Concept national maladies rares<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2014-10-15T11:14:11+02:00\" >15. octobre 2014<\/time><\/span><p>En r\u00e9ponse au postulat Humbel d\u00e9pos\u00e9 en d\u00e9cembre 2010 et au postulat Pfister de septembre 2011, le Conseil f\u00e9d\u00e9ral a adopt\u00e9 un concept national sur les maladies rares, le 15 octobre 2014. <\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/10\/15\/ein-konzept-fur-seltene-krankheiten\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2014-10-15T11:14:11+02:00\" >2014-10-15 11:14:11<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-07 16:22:51<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Concept national maladies rares<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-391 post-loop-33 post-parity-odd bloglist-excerpt  post-391 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/04\/05\/interventions-parlementaires\/\" rel=\"bookmark\" title=\"Lien permanent : Interventions parlementaires\">Interventions parlementaires<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2014-04-05T11:25:45+02:00\" >5. avril 2014<\/time><\/span><div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/04\/05\/interventions-parlementaires\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2014-04-05T11:25:45+02:00\" >2014-04-05 11:25:45<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-03-26 10:57:39<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Interventions parlementaires<\/span><\/span><\/span><\/article><article class=\"post-entry post-entry-type-standard post-entry-436 post-loop-34 post-parity-even post-entry-last bloglist-excerpt  post-436 post type-post status-publish format-standard hentry category-non-classifiee\"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" ><div class=\"blog-meta\"><\/div><div class='entry-content-wrapper clearfix standard-content'><header class=\"entry-content-header\"><h2 class='post-title entry-title '  itemprop=\"headline\" ><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/01\/01\/journee-internationale-maladies-rares-en-suisse-2014\/\" rel=\"bookmark\" title=\"Lien permanent : Journ\u00e9e Internationale Maladies Rares en Suisse 2014\">Journ\u00e9e Internationale Maladies Rares en Suisse 2014<span class=\"post-format-icon minor-meta\"><\/span><\/a><\/h2><\/header><span class=\"post-meta-infos\"><time class=\"date-container minor-meta updated\"  itemprop=\"datePublished\" datetime=\"2014-01-01T11:47:07+01:00\" >1. janvier 2014<\/time><\/span><p>Le 4 mars 2023, la 13e Journ\u00e9e internationale des maladies rares a eu lieu virtuellement sur le th\u00e8me de l&rsquo;implication des patients dans la recherche clinique et les soins de sant\u00e9 : \u00ab\u00a0D\u00e9fis et opportunit\u00e9s\u00a0\u00bb.<\/p>\n<div class=\"read-more-link\"><a href=\"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/01\/01\/journee-internationale-maladies-rares-en-suisse-2014\/\" class=\"more-link\">Lire la suite<span class=\"more-link-arrow\"><\/span><\/a><\/div><footer class=\"entry-footer\"><\/footer><div class='post_delimiter'><\/div><\/div><div class=\"post_author_timeline\"><\/div><span class='hidden'>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" >\n\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<span itemprop='height'>0<\/span>\n\t\t\t\t\t\t<span itemprop='width'>0<\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<span class='av-structured-data'  itemprop=\"publisher\" itemtype=\"https:\/\/schema.org\/Organization\" itemscope=\"itemscope\" >\n\t\t\t\t\t\t<span itemprop='name'>patblaser<\/span>\n\t\t\t\t\t\t<span itemprop='logo' itemscope itemtype='https:\/\/schema.org\/ImageObject'>\n\t\t\t\t\t\t\t<span itemprop='url'>https:\/\/ig-seltene-krankheiten.ch\/wp-content\/uploads\/2024\/03\/logo-3.png<\/span>\n\t\t\t\t\t\t<\/span>\n\t\t\t\t<\/span><span class='av-structured-data'  itemprop=\"author\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/Person\" ><span itemprop='name'>patblaser<\/span><\/span><span class='av-structured-data'  itemprop=\"datePublished\" datetime=\"2014-01-01T11:47:07+01:00\" >2014-01-01 11:47:07<\/span><span class='av-structured-data'  itemprop=\"dateModified\" itemtype=\"https:\/\/schema.org\/dateModified\" >2024-05-08 09:19:28<\/span><span class='av-structured-data'  itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/mainEntityOfPage\" ><span itemprop='name'>Journ\u00e9e Internationale Maladies Rares en Suisse 2014<\/span><\/span><\/span><\/article><\/div><\/p><\/div><div  class='flex_column av-13x28-700e4e4b6e45e1c9534a90bd5efc23a2 av_one_third flex_column_div  '     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