{"id":415,"date":"2018-03-28T17:51:06","date_gmt":"2018-03-28T15:51:06","guid":{"rendered":"https:\/\/pierrerobineurope.com?page_id=415"},"modified":"2026-10-31T18:20:13","modified_gmt":"2026-10-31T17:20:13","slug":"accueil","status":"publish","type":"page","link":"https:\/\/pierrerobineurope.com\/fr\/","title":{"rendered":"Pierre Robin Europe"},"content":{"rendered":"<div id='full_slider_1'  class='avia-fullwidth-slider main_color avia-shadow   avia-builder-el-0  el_before_av_textblock  avia-builder-el-first   container_wrap sidebar_right'  ><div  class='avia-slideshow av-m6eu1ynk-0c1335e4d7f49b3cce0c57890c3a06f2 avia-slideshow-no scaling av_slideshow_full avia-fade-slider av-slideshow-ui av-control-default av-slideshow-autoplay av-loop-endless av-loop-manual-endless av-default-height-applied   avia-slideshow-1' data-slideshow-options=\"{&quot;animation&quot;:&quot;fade&quot;,&quot;autoplay&quot;:true,&quot;loop_autoplay&quot;:&quot;endless&quot;,&quot;interval&quot;:15,&quot;loop_manual&quot;:&quot;manual-endless&quot;,&quot;autoplay_stopper&quot;:false,&quot;noNavigation&quot;:false,&quot;bg_slider&quot;:false,&quot;keep_padding&quot;:false,&quot;hoverpause&quot;:false,&quot;show_slide_delay&quot;:0}\"  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" ><ul class='avia-slideshow-inner ' style='padding-bottom: 52.333333333333%;'><li  class='avia-slideshow-slide av-m6eu1ynk-0c1335e4d7f49b3cce0c57890c3a06f2__0  slide-1 slide-odd'><a href=\"https:\/\/pierrerobineurope.com\/fr\/utiliser-le-droit-pour-ameliorer-lacces-aux-soins-pour-les-maladies-rares\/\"  data-rel='slideshow-1' class='avia-slide-wrap '   ><div class='av-slideshow-caption av-m6eu1ynk-0c1335e4d7f49b3cce0c57890c3a06f2__0 caption_fullwidth caption_center caption_center_framed caption_framed'><div class=\"container caption_container\"><div class=\"slideshow_caption\"><div class=\"slideshow_inner_caption\"><div class=\"slideshow_align_caption\"><h2 class='avia-caption-title '  itemprop=\"name\" >Utiliser le droit pour am\u00e9liorer l\u2019acc\u00e8s aux soins pour les maladies rares<\/h2><div class='avia-caption-content '  itemprop=\"description\" ><p>Congr\u00e8s mondial sur les m\u00e9dicaments orphelins, octobre 2026<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><img fetchpriority=\"high\" decoding=\"async\" loading=\"eager\" class=\"wp-image-4173 avia-img-lazy-loading-not-4173\"  src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/10\/OG-WODC-2026-tny.png\" width=\"1200\" height=\"628\" title='OG-WODC-2026-tny' alt=''  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/10\/OG-WODC-2026-tny.png 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/10\/OG-WODC-2026-tny-300x157.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/10\/OG-WODC-2026-tny-1030x539.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/10\/OG-WODC-2026-tny-768x402.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/10\/OG-WODC-2026-tny-705x369.png 705w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/a><\/li><li  class='avia-slideshow-slide av-m6eu1ynk-0c1335e4d7f49b3cce0c57890c3a06f2__1  slide-2 slide-even'><a href=\"https:\/\/pierrerobineurope.com\/fr\/acces-aux-soins-pour-les-maladies-rares\/\"  data-rel='slideshow-1' class='avia-slide-wrap '   ><img decoding=\"async\" loading=\"eager\" class=\"wp-image-4030 avia-img-lazy-loading-not-4030\"  src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-OG-fr.png\" width=\"1200\" height=\"628\" title='access-to-care-OG-fr' alt=''  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-OG-fr.png 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height=\"628\" title='OG20-macron-fr' alt=''  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2020\/07\/OG20-macron-fr.jpg 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2020\/07\/OG20-macron-fr-300x157.jpg 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2020\/07\/OG20-macron-fr-1030x539.jpg 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2020\/07\/OG20-macron-fr-768x402.jpg 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2020\/07\/OG20-macron-fr-705x369.jpg 705w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/a><\/li><\/ul><div class='avia-slideshow-arrows avia-slideshow-controls' ><a href='#prev' class='prev-slide  avia-svg-icon avia-font-svg_entypo-fontello' data-av_svg_icon='left-open-big' data-av_iconset='svg_entypo-fontello' tabindex='-1' title=\"Pr\u00e9c\u00e9dent\"><svg version=\"1.1\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"15\" height=\"32\" viewBox=\"0 0 15 32\" preserveAspectRatio=\"xMidYMid meet\" aria-labelledby='av-svg-title-1' aria-describedby='av-svg-desc-1' role=\"graphics-symbol\" aria-hidden=\"true\">\n<title id='av-svg-title-1'>Pr\u00e9c\u00e9dent<\/title>\n<desc id='av-svg-desc-1'>Pr\u00e9c\u00e9dent<\/desc>\n<path d=\"M14.464 27.84q0.832 0.832 0 1.536-0.832 0.832-1.536 0l-12.544-12.608q-0.768-0.768 0-1.6l12.544-12.608q0.704-0.832 1.536 0 0.832 0.704 0 1.536l-11.456 11.904z\"><\/path>\n<\/svg><span class='avia_hidden_link_text'>Pr\u00e9c\u00e9dent<\/span><\/a><a href='#next' class='next-slide  avia-svg-icon avia-font-svg_entypo-fontello' data-av_svg_icon='right-open-big' data-av_iconset='svg_entypo-fontello' tabindex='-1' title=\"Suivant\"><svg version=\"1.1\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"15\" height=\"32\" viewBox=\"0 0 15 32\" preserveAspectRatio=\"xMidYMid meet\" aria-labelledby='av-svg-title-2' aria-describedby='av-svg-desc-2' role=\"graphics-symbol\" aria-hidden=\"true\">\n<title id='av-svg-title-2'>Suivant<\/title>\n<desc id='av-svg-desc-2'>Suivant<\/desc>\n<path d=\"M0.416 27.84l11.456-11.84-11.456-11.904q-0.832-0.832 0-1.536 0.832-0.832 1.536 0l12.544 12.608q0.768 0.832 0 1.6l-12.544 12.608q-0.704 0.832-1.536 0-0.832-0.704 0-1.536z\"><\/path>\n<\/svg><span class='avia_hidden_link_text'>Suivant<\/span><\/a><\/div><div class='avia-slideshow-dots avia-slideshow-controls'><a href='#1' class='goto-slide active' >1<\/a><a href='#2' class='goto-slide ' >2<\/a><a href='#3' class='goto-slide ' >3<\/a><a href='#4' class='goto-slide ' >4<\/a><\/div><\/div><\/div><div id='after_full_slider_1'  class='main_color av_default_container_wrap container_wrap sidebar_right'  ><div class='container av-section-cont-open' ><div class='template-page content  av-content-small alpha units'><div class='post-entry post-entry-type-page post-entry-415'><div class='entry-content-wrapper clearfix'>\n<section  class='av_textblock_section av-ji09a71e-5bd41e862a878fb4b6314d129014194d '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h2 style=\"text-align: left;\">PIERRE ROBIN EUROPE<\/h2>\n<p>Bienvenue sur le site de Pierre Robin Europe, une organisation internationale \u00e0 but non lucratif compos\u00e9e de patients et de cliniciens qui apportent soutien et conseils aux patients souffrant de la maladie rare qu&rsquo;est la s\u00e9quence de Pierre Robin \/ le syndrome de Pierre Robin. Nous collaborons avec des groupes locaux de patients atteints de la s\u00e9quence de Pierre Robin et des cliniciens du monde entier et poursuivons divers objectifs, dont les suivants :<\/p>\n<ul>\n<li>Promouvoir la communication et accro\u00eetre la sensibilisation \u00e0 la maladie rare qu&rsquo;est la s\u00e9quence de Pierre Robin.<\/li>\n<li>Partager des informations scientifiquement \u00e9tay\u00e9es et accessibles sur la s\u00e9quence de Pierre Robin avec les patients atteints de la s\u00e9quence de Pierre Robin, leurs familles et les prestataires de soins de sant\u00e9 qui traitent les enfants atteints de cette maladie rare.<\/li>\n<li>Fournir des informations sur les techniques qui existent actuellement pour diagnostiquer la s\u00e9quence de Pierre Robin pendant la p\u00e9riode pr\u00e9natale ; plaider pour le d\u00e9veloppement d&rsquo;un protocole de d\u00e9pistage \u00e9chographique f\u0153tal scientifiquement valid\u00e9 qui peut \u00eatre utilis\u00e9 par les professionnels de l&rsquo;\u00e9chographie dans le monde entier pour diagnostiquer la s\u00e9quence de Pierre Robin pendant la p\u00e9riode pr\u00e9natale.<\/li>\n<li>Am\u00e9liorer l&rsquo;acc\u00e8s aux soins en expliquant aux patients atteints de la s\u00e9quence de Pierre Robin dans l&rsquo;Union europ\u00e9enne comment ils peuvent acc\u00e9der \u00e0 des traitements hautement sp\u00e9cialis\u00e9s pour les maladies rares dans d&rsquo;autres \u00c9tats membres de l&rsquo;UE en utilisant la Directive 2011 relative aux droits des patients en mati\u00e8re de soins de sant\u00e9 transfrontaliers, le R\u00e8glement (CE) n\u00b0 883 sur la coordination des syst\u00e8mes de s\u00e9curit\u00e9 sociale, et la jurisprudence de la Cour de justice de l&rsquo;Union europ\u00e9enne ; s&rsquo;engager avec des avocats, des universitaires et des groupes de d\u00e9fense des patients sur l&rsquo;utilisation de ces lois ; s&rsquo;engager dans des actions de sensibilisation du public et des actions en justice lorsque ces lois ne sont pas respect\u00e9es.<\/li>\n<li>D\u00e9fendre les soins centr\u00e9s sur le patient et le droit d&rsquo;acc\u00e8s aux soins, non seulement dans l&rsquo;int\u00e9r\u00eat des b\u00e9b\u00e9s atteints de la s\u00e9quence de Pierre Robin, mais aussi dans l&rsquo;int\u00e9r\u00eat de tous les patients atteints de maladies rares, o\u00f9 qu&rsquo;ils se trouvent.<\/li>\n<\/ul>\n<\/div><\/section>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"open","template":"","meta":{"footnotes":""},"class_list":["post-415","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.8 (Yoast SEO v28.8) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Pierre Robin Europe<\/title>\n<meta name=\"description\" content=\"Une organisation internationale \u00e0 but non lucratif qui 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