{"id":3877,"date":"2025-01-26T23:19:20","date_gmt":"2025-01-26T22:19:20","guid":{"rendered":"https:\/\/pierrerobineurope.com\/?p=3877"},"modified":"2026-07-06T17:06:57","modified_gmt":"2026-07-06T15:06:57","slug":"acces-aux-soins-pour-les-maladies-rares","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/acces-aux-soins-pour-les-maladies-rares\/","title":{"rendered":"Acc\u00e8s aux soins pour les maladies rares"},"content":{"rendered":"\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\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2y0is2-b98078d6226c4a817cc22716c2e96c03\">\n#top .hr.hr-invisible.av-2y0is2-b98078d6226c4a817cc22716c2e96c03{\nheight:35px;\n}\n<\/style>\n<div  class='hr av-2y0is2-b98078d6226c4a817cc22716c2e96c03 hr-invisible  avia-builder-el-0  el_before_av_video  avia-builder-el-first '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-4033\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr.png\" alt=\"\" width=\"1200\" height=\"456\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr.png 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr-300x114.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr-1030x391.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr-768x292.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr-705x268.png 705w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2026\/02\/access-to-care-b-fr-845x321.png 845w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><\/p>\n<h1 style=\"text-align: center;\">Vid\u00e9o sur l&rsquo;acc\u00e8s aux soins pour les maladies rares<\/h1>\n<p>Une pr\u00e9sentation sur l&rsquo;acc\u00e8s aux soins pour les maladies rares faite par Philippe Pakter, pr\u00e9sident et directeur juridique de la Fondation Pierre Robin Europe, lors d&rsquo;une conf\u00e9rence m\u00e9dicale internationale.<\/p>\n<div  class='avia-video av-39yhd1-51aa10fa7036f130657d3268b4149a06 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=y_ZaX7lOzBA'><script type='text\/html' class='av-video-tmpl'><div class='avia-iframe-wrap'><iframe loading=\"lazy\" title=\"L\u2019acc\u00e8s aux soins pour les maladies rares\" width=\"1500\" height=\"844\" src=\"https:\/\/www.youtube.com\/embed\/y_ZaX7lOzBA?feature=oembed&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<div  class='hr av-28evrm-1-711e2a7f4c4b83d934bcf16e06d5f503 hr-default  avia-builder-el-2  el_after_av_video  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h1 style=\"text-align: center;\">Renvoi pr\u00e9judiciel \u00e0 la Cour de justice de l&rsquo;Union europ\u00e9enne<\/h1>\n<div id=\"attachment_3690\" style=\"width: 1209px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3690\" class=\"wp-image-3690 size-full\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-ECJ.jpg\" alt=\"\" width=\"1199\" height=\"657\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-ECJ.jpg 1199w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-ECJ-300x164.jpg 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-ECJ-1030x564.jpg 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-ECJ-768x421.jpg 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-ECJ-705x386.jpg 705w\" sizes=\"auto, (max-width: 1199px) 100vw, 1199px\" \/><p id=\"caption-attachment-3690\" class=\"wp-caption-text\">Renvoi pr\u00e9judiciel \u00e0 la Cour de justice de l&rsquo;Union europ\u00e9enne<\/p><\/div>\n<p>Ce document traite des patients atteints de maladies rares, de l&rsquo;acc\u00e8s aux soins, de la l\u00e9gislation europ\u00e9enne et des droits de l&rsquo;homme. L&rsquo;objectif de cette action en justice est d&rsquo;obtenir une modification importante et attendue depuis longtemps de la l\u00e9gislation europ\u00e9enne : faciliter l&rsquo;acc\u00e8s aux soins pour des millions de patients atteints de maladies rares, dans toute l&rsquo;Europe. Nous avons soumis ce document juridique \u00e0 un tribunal national fran\u00e7ais ; nous avons ensuite demand\u00e9 au tribunal national fran\u00e7ais de le pr\u00e9senter \u00e0 la Cour de justice de l&rsquo;Union europ\u00e9enne.<\/p>\n<ul>\n<li><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/RENVOI-PREJUDICIEL-CJUE.pdf\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>T\u00e9l\u00e9chargez le renvoi pr\u00e9judiciel<\/strong><\/span><\/a><\/li>\n<\/ul>\n<div  class='hr av-28evrm-1-1-2ee80ab883af9a5f09d0d70b8acb26d5 hr-default  avia-builder-el-3  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h1 style=\"text-align: center;\">M\u00e9moires d&rsquo;amicus curiae<\/h1>\n<div id=\"attachment_3800\" style=\"width: 610px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3800\" class=\"wp-image-3800\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/pen-writing-letter.jpg\" alt=\"\" width=\"600\" height=\"451\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/pen-writing-letter.jpg 1000w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/pen-writing-letter-300x225.jpg 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/pen-writing-letter-768x577.jpg 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/pen-writing-letter-705x529.jpg 705w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><p id=\"caption-attachment-3800\" class=\"wp-caption-text\">Un \u00ab\u00a0m\u00e9moire d&rsquo;amicus curiae\u00a0\u00bb est une lettre soumise \u00e0 un tribunal par une partie ext\u00e9rieure, qui fournit son analyse de l&rsquo;affaire.<\/p><\/div>\n<p>Un \u00ab\u00a0m\u00e9moire d&rsquo;amicus curiae\u00a0\u00bb est une lettre soumise \u00e0 un tribunal par une partie ext\u00e9rieure, qui fournit son analyse de l&rsquo;affaire. Les m\u00e9moires d&rsquo;amicus curiae suivants ont d\u00e9j\u00e0 \u00e9t\u00e9 soumis \u00e0 la cour. D&rsquo;autres m\u00e9moires d&rsquo;amicus curiae seront publi\u00e9s sur cette page au fur et \u00e0 mesure qu&rsquo;ils seront soumis.<\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-3839\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/Durham-logo-200.png\" alt=\"\" width=\"75\" height=\"31\" \/>Dr. Barend van Leeuwen, professeur de droit de l&rsquo;Union europ\u00e9enne, Universit\u00e9 de Durham, Facult\u00e9 de droit. <a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/Amicus-curiae-Barend-van-Leeuwen.pdf\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>T\u00e9l\u00e9chargez le m\u00e9moire d&rsquo;amicus curiae du professeur Barend van Leeuwen<\/strong><\/span><\/a><\/p>\n<p><br class=\"avia-permanent-lb\" \/><br class=\"avia-permanent-lb\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-3842\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/ERN-RND-200.png\" alt=\"\" width=\"100\" height=\"69\" \/>Dr. Holm Graessner, directeur g\u00e9n\u00e9ral du centre des maladies rares de l&rsquo;h\u00f4pital universitaire de T\u00fcbingen ; coordinateur du R\u00e9seau europ\u00e9en de r\u00e9f\u00e9rence pour les maladies neurologiques rares (ERN-RND). <a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/Amicus-curiae-Holm-Graessner.pdf\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>T\u00e9l\u00e9chargez le m\u00e9moire d&rsquo;amicus curiae du Dr. Holm Graessner<\/strong><\/span><\/a><\/p>\n<p><br class=\"avia-permanent-lb\" \/><br class=\"avia-permanent-lb\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-3848\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/Erasmus-logo-200.png\" alt=\"\" width=\"75\" height=\"68\" \/>Dr. Andr\u00e9 den Exter, Universitair hoofddocent Gezondheidsrecht (professeur associ\u00e9 de droit de la sant\u00e9), Universit\u00e9 Erasmus de Rotterdam, Facult\u00e9 de droit. <a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/Amicus-curiae-Andre-den-Exter.pdf\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>T\u00e9l\u00e9chargez le m\u00e9moire d&rsquo;amicus curiae du professeur Andr\u00e9 den Exter<\/strong><\/span><\/a><\/p>\n<p><br class=\"avia-permanent-lb\" \/><br class=\"avia-permanent-lb\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-3982\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/UPEC-logo-200.png\" alt=\"\" width=\"75\" height=\"63\" \/>Dr. St\u00e9phane de la Rosa, Professeur de droit public, Chaire Jean Monnet, l\u2019Universit\u00e9 Paris-Est Cr\u00e9teil. <a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/03\/Amicus-curiae-Stephane-de-la-Rosa.pdf\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>T\u00e9l\u00e9chargez le m\u00e9moire d\u2019amicus curiae du professeur St\u00e9phane de la Rosa<\/strong><\/span><\/a><\/p>\n<p style=\"text-align: left;\"><div  class='hr av-28evrm-1-1-2-a8a20eefbaaa46ec9a99971a008926dc hr-default  avia-builder-el-4  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div><\/p>\n<h1 style=\"text-align: center;\">Articles publi\u00e9s<\/h1>\n<p>Mme Kumsal Bayazit, PDG d&rsquo;Elsevier, nous a personnellement fourni le Gold Open Access pour ces deux articles. Nous remercions Mme Bayazit pour son leadership exceptionnel, son engagement envers la communaut\u00e9 des maladies rares et sa sinc\u00e8re gentillesse.<\/p>\n<p>&nbsp;<\/p>\n<div id=\"attachment_3696\" style=\"width: 1210px\" class=\"wp-caption aligncenter\"><a href=\"https:\/\/www.sciencedirect.com\/science\/article\/pii\/S2950008724000012\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3696\" class=\"wp-image-3696 size-full\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-gaping-unmet-needs-article.png\" alt=\"\" width=\"1200\" height=\"664\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-gaping-unmet-needs-article.png 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-gaping-unmet-needs-article-300x166.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-gaping-unmet-needs-article-1030x570.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-gaping-unmet-needs-article-768x425.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-gaping-unmet-needs-article-705x390.png 705w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><\/a><p id=\"caption-attachment-3696\" class=\"wp-caption-text\">Rare disease care in Europe &#8211; Gaping unmet needs<\/p><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2c520i-1-2-a2cad8333903717b00b09bc00773b451\">\n#top .hr.hr-invisible.av-2c520i-1-2-a2cad8333903717b00b09bc00773b451{\nheight:10px;\n}\n<\/style>\n<div  class='hr av-2c520i-1-2-a2cad8333903717b00b09bc00773b451 hr-invisible  avia-builder-el-5  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<ul>\n<li>\u00ab\u00a0Rare disease care in Europe &#8211; gaping unmet needs\u00a0\u00bb, un article publi\u00e9 dans la revue Elsevier, <em>Rare<\/em>.<em>\u00a0<\/em><a href=\"https:\/\/www.sciencedirect.com\/science\/article\/pii\/S2950008724000012\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>Acc\u00e8s libre ; t\u00e9l\u00e9chargement gratuit<\/strong><\/span><\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<div id=\"attachment_3699\" style=\"width: 1210px\" class=\"wp-caption aligncenter\"><a href=\"https:\/\/www.sciencedirect.com\/science\/article\/pii\/S1744165X21000962\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3699\" class=\"wp-image-3699 size-full\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-a-parents-perspective-article.png\" alt=\"\" width=\"1200\" height=\"576\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-a-parents-perspective-article.png 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-a-parents-perspective-article-300x144.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-a-parents-perspective-article-1030x494.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-a-parents-perspective-article-768x369.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-a-parents-perspective-article-705x338.png 705w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><\/a><p id=\"caption-attachment-3699\" class=\"wp-caption-text\">A parent&rsquo;s view on the care of their baby with Robin sequence<\/p><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2c520i-1-1-1-1c71b500bce859396b8c068ae745c569\">\n#top .hr.hr-invisible.av-2c520i-1-1-1-1c71b500bce859396b8c068ae745c569{\nheight:10px;\n}\n<\/style>\n<div  class='hr av-2c520i-1-1-1-1c71b500bce859396b8c068ae745c569 hr-invisible  avia-builder-el-6  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<ul>\n<li>\u00ab\u00a0A parent&rsquo;s view on the care of their baby with Pierre Robin Sequence\u00a0\u00bb, un article publi\u00e9 dans la revue Elsevier, <em>Seminars in Fetal and Neonatal Medicine<\/em>. <a href=\"https:\/\/www.sciencedirect.com\/science\/article\/pii\/S1744165X21000962\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>Acc\u00e8s libre ; t\u00e9l\u00e9chargement gratuit<\/strong><\/span><\/a><\/li>\n<\/ul>\n<div  class='hr av-28evrm-1-1-2-1-712340f251d91725869edfb7fed04ec4 hr-default  avia-builder-el-7  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h1 style=\"text-align: center;\">La plaque palatine de T\u00fcbingen &#8211; informations pour les cliniciens et les parents<\/h1>\n<div id=\"attachment_3705\" style=\"width: 1210px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3705\" class=\"size-full wp-image-3705\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-tpp-s2-application.png\" alt=\"\" width=\"1200\" height=\"460\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-tpp-s2-application.png 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-tpp-s2-application-300x115.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-tpp-s2-application-1030x395.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-tpp-s2-application-768x294.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/12\/access-to-care-tpp-s2-application-705x270.png 705w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><p id=\"caption-attachment-3705\" class=\"wp-caption-text\">La plaque palatine de T\u00fcbingen, un traitement orthodontique non chirurgical pour les b\u00e9b\u00e9s atteints de la maladie rare, la S\u00e9quence Pierre Robin<\/p><\/div>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-3823\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-80x80.png\" alt=\"\" width=\"80\" height=\"80\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-80x80.png 80w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-300x300.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-1030x1030.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-768x768.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-1536x1536.png 1536w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-36x36.png 36w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-180x180.png 180w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-1500x1500.png 1500w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo-705x705.png 705w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-logo.png 2000w\" sizes=\"auto, (max-width: 80px) 100vw, 80px\" \/>Pierre Robin Europe a \u00e9t\u00e9 contact\u00e9 par un couple dont le b\u00e9b\u00e9 a \u00e9t\u00e9 diagnostiqu\u00e9 avec la maladie rare, la S\u00e9quence Pierre Robin. Le couple souhaitait que leur b\u00e9b\u00e9 b\u00e9n\u00e9ficie du traitement de la plaque palatine de T\u00fcbingen en Allemagne. Ce document, appel\u00e9 \u00ab\u00a0demande S2\u00a0\u00bb, compare le traitement par plaque palatine de T\u00fcbingen avec d&rsquo;autres traitements. <span style=\"text-decoration: underline;\"><strong><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/S2-application-TPP-Treatment.docx\" target=\"_blank\" rel=\"noopener\">T\u00e9l\u00e9chargez-le en anglais, sous la forme d&rsquo;un document Word, que vous pouvez personnaliser<\/a><\/strong><\/span><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-3827\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/TPP-research-logo-80x80.png\" alt=\"\" width=\"80\" height=\"80\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/TPP-research-logo-80x80.png 80w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/TPP-research-logo-36x36.png 36w\" sizes=\"auto, (max-width: 80px) 100vw, 80px\" \/>Les \u00e9tudes m\u00e9dicales sur la plaque palatine de T\u00fcbingen, qui ont \u00e9t\u00e9 soumises avec la demande S2 du couple. <span style=\"text-decoration: underline;\"><strong><a href=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2024\/02\/19-TPP-studies.zip\" target=\"_blank\" rel=\"noopener\">T\u00e9l\u00e9charger en anglais<\/a><\/strong><\/span><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<div  class='hr av-28evrm-1-1-1-e27b81e8264e5dee6ee4a55b6f1b8e5f hr-default  avia-builder-el-8  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h1 style=\"text-align: center;\">Le parcours d&rsquo;un patient atteint d&rsquo;une maladie rare<\/h1>\n<div id=\"attachment_3890\" style=\"width: 1210px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3890\" class=\"size-full wp-image-3890\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/acces-aux-soins-pour-les-maladies-rares-lettre-a-macron.png\" alt=\"\" width=\"1200\" height=\"628\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/acces-aux-soins-pour-les-maladies-rares-lettre-a-macron.png 1200w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/acces-aux-soins-pour-les-maladies-rares-lettre-a-macron-300x157.png 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/acces-aux-soins-pour-les-maladies-rares-lettre-a-macron-1030x539.png 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/acces-aux-soins-pour-les-maladies-rares-lettre-a-macron-768x402.png 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2025\/01\/acces-aux-soins-pour-les-maladies-rares-lettre-a-macron-705x369.png 705w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><p id=\"caption-attachment-3890\" class=\"wp-caption-text\">Lettre au pr\u00e9sident fran\u00e7ais Emmanuel Macron<\/p><\/div>\n<ul>\n<li>Le parcours d&rsquo;un patient atteint d&rsquo;une maladie rare, sous la forme <a href=\"https:\/\/pierrerobineurope.com\/fr\/lysiane\/\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>d&rsquo;une lettre envoy\u00e9e au pr\u00e9sident fran\u00e7ais Emmanuel Macron<\/strong><\/span><\/a>.<\/li>\n<li>Ce parcours d&rsquo;un patient atteint d&rsquo;une maladie rare comprend <a href=\"https:\/\/pierrerobineurope.com\/fr\/lysiane\/#letters\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\"><strong>des lettres de soutien des principales organisations europ\u00e9ennes de patients &#8211; le Forum europ\u00e9en des patients et EURORDIS &#8211; ainsi qu&rsquo;une lettre officielle de soutien de l&rsquo;avocate et membre du Parlement europ\u00e9en Fran\u00e7oise Grosset\u00eate<\/strong><\/span><\/a>\u00a0(Rapporteur sp\u00e9cial du Parlement europ\u00e9en pour la Directive europ\u00e9enne sur les soins de sant\u00e9 transfrontaliers). Ces trois lettres reconnaissent que le refus de la France d&rsquo;autoriser l&rsquo;acc\u00e8s en Allemagne \u00e0 un traitement s\u00fbr et efficace contre une maladie rare constitue une violation du droit europ\u00e9en.<\/li>\n<\/ul>\n<div  class='hr av-28evrm-1-1-2-2-3d7a00763e97f625204a7223c2c1e269 hr-default  avia-builder-el-9  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h1 style=\"text-align: center;\">Contactez nous<\/h1>\n<p>Contactez-nous si vous souhaitez nous aider \u00e0 faciliter l&rsquo;acc\u00e8s aux soins pour les maladies rares.<\/p>\n<script>\nvar 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