{"id":436,"date":"2014-01-01T11:47:07","date_gmt":"2014-01-01T10:47:07","guid":{"rendered":"https:\/\/wasipope.cyon.site\/?p=436"},"modified":"2024-05-08T09:19:28","modified_gmt":"2024-05-08T07:19:28","slug":"journee-internationale-maladies-rares-en-suisse-2014","status":"publish","type":"post","link":"https:\/\/ig-seltene-krankheiten.ch\/fr\/2014\/01\/01\/journee-internationale-maladies-rares-en-suisse-2014\/","title":{"rendered":"Journ\u00e9e Internationale Maladies Rares en Suisse 2014"},"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>\r\n\r\n<div class='clear'><\/div><div id='sub_menu1'  class='av-submenu-container av-7iqp-c303ac7d9c65ba19eb2a8c0bf317f918 header_color av-switch-768  avia-builder-el-1  el_after_av_layerslider  el_before_av_two_third  av-sticky-submenu 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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><div id='after_submenu_1'  class='main_color av_default_container_wrap 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-436'><div class='entry-content-wrapper clearfix'>\r\n\r\n<div  class='flex_column av-6dzr-2da157fbbdf68d71b63f961e0b687a91 av_two_third  avia-builder-el-2  el_after_av_submenu  avia-builder-el-no-sibling  first flex_column_div  '     ><section  class='av_textblock_section av-lu2dwwa0-7d8be0a7a3511a01c6682a09b7578452 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><h1>Journ\u00e9e Internationale Maladies Rares en Suisse 2014<\/h1>\n<\/div><\/section>\n<section  class='av_textblock_section av-lu75ltj5-7a89f723e3445b77c41946f8c0cf0749 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p class=\"intro\">4\u00e8me Journ\u00e9e Internationale des Maladies Rares en Suisse : Les priorit\u00e9s des personnes concern\u00e9es<\/p>\n<p>ProRaris, l\u2019Alliance Maladies Rares \u2013 Suisse, organise pour la 4\u00e8me ann\u00e9e cons\u00e9cutive la Journ\u00e9e Internationale des maladies rares en Suisse, le samedi 1er mars 2014 \u00e0 l\u2019H\u00f4pital Universitaire de Berne (Inselspital), en partenariat avec le Prof. Sabina Gallati, Cheffe du D\u00e9partement de G\u00e9n\u00e9tique Humaine.<\/p>\n<p>Ce rendez-vous annuel incontournable pour toutes les personnes concern\u00e9es par les maladies rares dressera un bilan de la situation et des attentes des patients, en particulier par rapport \u00e0 la strat\u00e9gie nationale Maladies Rares, actuellement \u00e9labor\u00e9e sous la responsabilit\u00e9 de l\u2019Office f\u00e9d\u00e9ral de la sant\u00e9 publique. Oliver Peters, Vice-directeur de l\u2019OFSP fera \u00e9galement un point sur l\u2019\u00e9tat actuel du projet de concept national Maladies Rares.<\/p>\n<p>Destin\u00e9e aux patients, \u00e0 leurs proches, aux associations de maladies rares, aux professionnels de la sant\u00e9, aux scientifiques, aux politiques et \u00e0 toutes les personnes concern\u00e9es par la probl\u00e9matique, cette journ\u00e9e d\u2019information mettra les patients atteints de maladies rares au centre des pr\u00e9occupations. Une plage horaire sera pr\u00e9vue pour le networking et la visite des stands des associations de patients.<\/p>\n<p>4\u00e8me Journ\u00e9e des Maladies Rares en Suisse<br \/>\nSamedi 1er mars 2014, de 10h15 \u00e0 17h00<br \/>\nH\u00f4pital Universitaire de Berne (Inselspital)<br \/>\nUniversit\u00e4tsklinik f\u00fcr Kinderheilkunde<br \/>\nAuditoire Ettore Ross<br \/>\nFreiburgstrasse<br \/>\n3010 Berne<\/p>\n<\/div><\/section><\/div><!-- \/wp:post-content -->","protected":false},"excerpt":{"rendered":"<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","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[],"class_list":["post-436","post","type-post","status-publish","format-standard","hentry","category-non-classifiee"],"_links":{"self":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts\/436","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/comments?post=436"}],"version-history":[{"count":3,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts\/436\/revisions"}],"predecessor-version":[{"id":716,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts\/436\/revisions\/716"}],"wp:attachment":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/media?parent=436"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/categories?post=436"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/tags?post=436"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}