{"id":3447,"date":"2023-04-25T10:56:56","date_gmt":"2023-04-25T08:56:56","guid":{"rendered":"https:\/\/pierrerobineurope.com\/?p=3447"},"modified":"2024-12-14T17:58:00","modified_gmt":"2024-12-14T16:58:00","slug":"spr-consensus","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/spr-consensus\/","title":{"rendered":"Troisi\u00e8me R\u00e9union Internationale de Consensus sur la S\u00e9quence Pierre Robin"},"content":{"rendered":"<p>\n<div role=\"navigation\" aria-label=\"S\u00e9lecteur de langue\" class=\"lang_sel_list_horizontal wpml-ls-statics-shortcode_actions wpml-ls wpml-ls-legacy-list-horizontal\" id=\"lang_sel_list\">\n\t<ul><li class=\"icl-en wpml-ls-slot-shortcode_actions wpml-ls-item wpml-ls-item-en wpml-ls-first-item wpml-ls-item-legacy-list-horizontal\">\n\t\t\t\t<a href=\"https:\/\/pierrerobineurope.com\/\" hreflang=\"en\" lang=\"en\" class=\"wpml-ls-link\" aria-label=\"Passer \u00e0 : English\" title=\"Passer \u00e0 : English\">\n\t\t\t\t\t                                    <img decoding=\"async\"\n            class=\"wpml-ls-flag iclflag\"\n            src=\"https:\/\/pierrerobineurope.com\/wp-content\/plugins\/sitepress-multilingual-cms\/res\/flags\/en.png\"\n            alt=\"\"\n            loading=\"lazy\"\n            width=18\n            height=12\n    \/><span class=\"wpml-ls-native icl_lang_sel_native\">English<\/span><\/a>\n\t\t\t<\/li><li class=\"icl-fr wpml-ls-slot-shortcode_actions wpml-ls-item wpml-ls-item-fr wpml-ls-current-language wpml-ls-item-legacy-list-horizontal\">\n\t\t\t\t<a href=\"https:\/\/pierrerobineurope.com\/fr\/\" hreflang=\"fr\" lang=\"fr\" class=\"wpml-ls-link\" aria-current=\"page\" aria-label=\"Passer \u00e0 : Fran\u00e7ais\" title=\"Passer \u00e0 : Fran\u00e7ais\">\n\t\t\t\t\t                                    <img decoding=\"async\"\n            class=\"wpml-ls-flag iclflag\"\n            src=\"https:\/\/pierrerobineurope.com\/wp-content\/plugins\/sitepress-multilingual-cms\/res\/flags\/fr.png\"\n            alt=\"\"\n            loading=\"lazy\"\n            width=18\n            height=12\n    \/><span class=\"wpml-ls-native icl_lang_sel_native\">Fran\u00e7ais<\/span><\/a>\n\t\t\t<\/li><li class=\"icl-de wpml-ls-slot-shortcode_actions wpml-ls-item wpml-ls-item-de wpml-ls-last-item wpml-ls-item-legacy-list-horizontal\">\n\t\t\t\t<a href=\"https:\/\/pierrerobineurope.com\/de\/\" hreflang=\"de\" lang=\"de\" class=\"wpml-ls-link\" aria-label=\"Passer \u00e0 : Deutsch\" title=\"Passer \u00e0 : Deutsch\">\n\t\t\t\t\t                                    <img decoding=\"async\"\n            class=\"wpml-ls-flag iclflag\"\n            src=\"https:\/\/pierrerobineurope.com\/wp-content\/plugins\/sitepress-multilingual-cms\/res\/flags\/de.png\"\n            alt=\"\"\n            loading=\"lazy\"\n            width=18\n            height=12\n    \/><span class=\"wpml-ls-native icl_lang_sel_native\">Deutsch<\/span><\/a>\n\t\t\t<\/li><\/ul>\n<\/div>\n<br \/>\nLa 3e R\u00e9union Internationale de Consensus sur la S\u00e9quence Pierre Robin \u00e9tait une conf\u00e9rence m\u00e9dicale internationale qui a rassembl\u00e9 des experts de la S\u00e9quence Pierre Robin du monde entier. La conf\u00e9rence s&rsquo;est tenue \u00e0 l&rsquo;h\u00f4pital universitaire de T\u00fcbingen en Allemagne.<\/p>\n<p>Au cours des 20 derni\u00e8res ann\u00e9es, les experts de cet h\u00f4pital ont d\u00e9velopp\u00e9 et test\u00e9 scientifiquement la \u00ab\u00a0Plaque Palatine de T\u00fcbingen\u00a0\u00bb. La Plaque Palatine de T\u00fcbingen est un traitement non chirurgical r\u00e9volutionnaire pour les b\u00e9b\u00e9s souffrant de la S\u00e9quence Pierre Robin. <a href=\"https:\/\/pierrerobineurope.com\/dr-hyeran-choo-non-surgical-orthodontic-airway-plate-treatment-stanford\/\" target=\"_blank\" rel=\"noopener\">L&rsquo;universit\u00e9 de Stanford en Californie propose le m\u00eame traitement r\u00e9volutionnaire<\/a> et d&rsquo;autres grands h\u00f4pitaux universitaires am\u00e9ricains sont en train de l&rsquo;adopter.<\/p>\n<p>Il a \u00e9t\u00e9 m\u00e9dicalement prouv\u00e9 que le traitement de la Plaque Palatine de T\u00fcbingen r\u00e9sout les difficult\u00e9s respiratoires et am\u00e9liore l&rsquo;alimentation (par exemple <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2020-Technical-Note-3D-printed-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2020<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2019-The-Tu\u0308bingen-Palatal-Plate-Summary-of-Current-Evidence.pdf\" target=\"_blank\" rel=\"noopener\">2019<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2019-Mandibular-Growth-with-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2019<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2017-Multicenter-Study-on-the-Effectiveness-of-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2017<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2017-Treatment-of-Infants-with-Syndromic-Robin-Sequence-with-Modified-Tu\u0308bingen-Palatal-Plates.pdf\" target=\"_blank\" rel=\"noopener\">2017<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2016-Functional-Treatment-of-Airway-Obstruction-and-Feeding-Difficulties-with-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2016<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2014-Initial-Treatment-and-Early-Weight-Gain-with-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2014<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2011-Treatment-of-Upper-Airway-Obstruction-and-Feeding-Problems-with-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2011<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2009-An-Oral-Appliance-with-Velar-Extension-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2009<\/a><\/span>, <span style=\"text-decoration: underline;\"><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2022\/08\/2007-Randomized-Clinical-Trial-of-the-Tu\u0308bingen-Palatal-Plate.pdf\" target=\"_blank\" rel=\"noopener\">2007<\/a><\/span>, etc.). Il permet aux b\u00e9b\u00e9s SPR d&rsquo;\u00e9viter une chirurgie agressive, y compris la MDO (ost\u00e9ogen\u00e8se par distraction mandibulaire). Et elle \u00e9limine la n\u00e9cessit\u00e9 de dormir sur le ventre. Le sommeil sur le ventre est aujourd&rsquo;hui tr\u00e8s controvers\u00e9, car il augmente consid\u00e9rablement le risque de mort subite du nourrisson (MSN).<\/p>\n<p>Les organisateurs de la conf\u00e9rence ont invit\u00e9 Pierre Robin Europe \u00e0 faire une pr\u00e9sentation sur la S\u00e9quence Pierre Robin du point de vue du patient. Le public \u00e9tant compos\u00e9 d&rsquo;experts de la S\u00e9quence Pierre Robin, principalement des chirurgiens et des m\u00e9decins, nous n&rsquo;avons pas fait d&rsquo;introduction \u00e0 la S\u00e9quence Pierre Robin. Au lieu de passer en revue les bases, nous avons d\u00e9cid\u00e9 d&rsquo;utiliser notre temps limit\u00e9 pour soulever des questions difficiles auxquelles les cliniciens pourraient r\u00e9fl\u00e9chir apr\u00e8s la conf\u00e9rence. Notre pr\u00e9sentation aborde la m\u00e9decine fond\u00e9e sur les preuves, l&rsquo;acc\u00e8s aux soins, l&rsquo;\u00e9thique m\u00e9dicale et la qualit\u00e9 de vie. Nous \u00e9voquons \u00e9galement bri\u00e8vement le premier proc\u00e8s intent\u00e9 par une famille de SPR devant la Cour europ\u00e9enne des droits de l&rsquo;homme. Ce proc\u00e8s, officiellement soutenu par EURORDIS, l&rsquo;Organisation europ\u00e9enne pour les maladies rares, a \u00e9t\u00e9 intent\u00e9 \u00e0 l&rsquo;occasion de la Journ\u00e9e des maladies rares, le 28 f\u00e9vrier 2023.<\/p>\n<div  class='avia-video av-26knd3-805564f20c55a320e802359a946964f7 avia-video-16-9 av-no-preview-image avia-video-load-always av-lazyload-immediate av-lazyload-video-embed'  itemprop=\"video\" itemtype=\"https:\/\/schema.org\/VideoObject\"  data-original_url='https:\/\/www.youtube.com\/watch?v=oSVY0mu-s28'><script type='text\/html' class='av-video-tmpl'><div class='avia-iframe-wrap'><iframe loading=\"lazy\" title=\"Se\u0301quence Pierre Robin, pr\u00e9sentation pour les cliniciens : le point de vue du patient SPR\" width=\"1500\" height=\"844\" src=\"https:\/\/www.youtube.com\/embed\/oSVY0mu-s28?feature=oembed&enablejsapi=1&origin=https:\/\/pierrerobineurope.com&autoplay=0&loop=0&controls=1&mute=0\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/div><\/script><div class='av-click-to-play-overlay'><div class=\"avia_playpause_icon\"><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Un patient atteint d&rsquo;une maladie rare, la S\u00e9quence Pierre Robin, parle franchement avec des cliniciens: la m\u00e9decine fond\u00e9e sur les preuves, l&rsquo;acc\u00e8s aux soins, l&rsquo;\u00e9thique m\u00e9dicale et la qualit\u00e9 de vie.<\/p>\n","protected":false},"author":1,"featured_media":3442,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[567],"tags":[],"class_list":["post-3447","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-mise-a-jour"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.8 (Yoast 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