{"id":562,"date":"2018-01-16T00:56:21","date_gmt":"2018-01-15T23:56:21","guid":{"rendered":"https:\/\/pierrerobineurope.com?p=562"},"modified":"2025-01-15T06:08:43","modified_gmt":"2025-01-15T05:08:43","slug":"european-patients-forum","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/european-patients-forum\/","title":{"rendered":"Le Forum europ\u00e9en des patients &#8211; lettre de soutien"},"content":{"rendered":"<p>Le Forum europ\u00e9en des patients (The European Patients\u2019 Forum) est la plus grande organisation m\u00e8re de d\u00e9fense des patients en Europe, et un acteur cl\u00e9 dans la r\u00e9daction de La Directive 2011\/24\/UE sur les soins de sant\u00e9 transfrontaliers. Ils ont \u00e9crit cette lettre ci-dessous, et ils l&rsquo;ont envoy\u00e9e directement au pr\u00e9sident fran\u00e7ais, le pr\u00e9sident Macron.<\/p>\n<p style=\"text-align: left;\"><!--more--><\/p>\n\n\t\t<div class=\"wppdfemb-frame-container-1\" style=\"-webkit-overflow-scrolling:auto;\">\n\t\t\t<iframe class=\"pdfembed-iframe nonfullscreen wppdf-emb-iframe-1\"\n\t\t\t\tsrc=\"https:\/\/pierrerobineurope.com\/fr\/?pdfemb-data=eyJ1cmwiOiJodHRwczpcL1wvcGllcnJlcm9iaW5ldXJvcGUuY29tXC93cC1jb250ZW50XC91cGxvYWRzXC8yMDE4XC8wM1wvRXVyb3BlYW4tUGF0aWVudHMtRm9ydW0tZW4tbGV0dGVyLW9mLXN1cHBvcnQtcmRjdC5wZGYiLCJ0aXRsZSI6IkV1cm9wZWFuLVBhdGllbnRzLUZvcnVtLWVuLWxldHRlci1vZi1zdXBwb3J0LXJkY3QiLCJpbmRleCI6MSwicGRmSUQiOjMxNH0\"\n\t\t\t\ttitle=\"European-Patients-Forum-en-letter-of-support-rdct\"\t\t\t\tdata-pdf-id=\"314\"\n\t\t\t\tdata-pdf-index=\"1\"\n\t\t\t\tstyle=\"border:none;width:100%;max-width:100%;height:100vh;\"\n\t\t\t\tscrolling=\"yes\">\n\t\t\t<\/iframe>\n\t\t<\/div>\n\n\t\t\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-mnhoq-8889f695446fdd603c0b95d5ec068ae8\">\n#top .hr.hr-invisible.av-mnhoq-8889f695446fdd603c0b95d5ec068ae8{\nheight:30px;\n}\n<\/style>\n<div  class='hr av-mnhoq-8889f695446fdd603c0b95d5ec068ae8 hr-invisible  avia-builder-el-0  el_before_av_hr  avia-builder-el-first '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<div  class='hr av-gp1s2-dc9377c3d3aa32c6d84eb1baa29f5c95 hr-default  avia-builder-el-1  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<p style=\"text-align: center;\">Ci-dessous, une traduction fran\u00e7aise non officielle du texte anglais contenu dans la lettre.<\/p>\n<div  class='hr av-92tv6-28370dc5a9f0c9be78c772ce8a2ed3d8 hr-default  avia-builder-el-2  el_after_av_hr  avia-builder-el-last '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-146 size-full alignright\" src=\"http:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/EPF_logo.png\" alt=\"\" width=\"261\" height=\"110\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/EPF_logo.png 261w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/EPF_logo-260x110.png 260w\" sizes=\"auto, (max-width: 261px) 100vw, 261px\" \/><\/p>\n<p>Monsieur le Pr\u00e9sident de la R\u00e9publique<br \/>\nPalais de l&rsquo;Elys\u00e9e<br \/>\n55 rue du Faubourg Saint-Honor\u00e9<br \/>\n75008 Paris<\/p>\n<p>Bruxelles, 16 janvier 2018<\/p>\n<p>Cher Monsieur Le Pr\u00e9sident Macron,<\/p>\n<p>Sujet: Acc\u00e8s aux soins de sant\u00e9 transfrontaliers en France \u2013 violation du droit de l&rsquo;UE<\/p>\n<p>Nous vous \u00e9crivons au nom du Forum Europ\u00e9en des Patients (EPF), une organisation m\u00e8re repr\u00e9sentant 74 organisations de patients \u00e0 travers l&rsquo;UE, pour vous demander votre soutien dans le cas de Lysiane Pakter, \u00e2g\u00e9e de 9 mois, repr\u00e9sent\u00e9e par ses parents, M. Philippe Pakter et Mme \u2588\u2588\u2588\u2588\u2588 \u2588\u2588\u2588\u2588\u2588\u2588\u2588, pour avoir son droit d&rsquo;acc\u00e8s aux soins de sant\u00e9 transfrontaliers reconnus par la Caisse Primaire d&rsquo;Assurance Maladie (CPAM) \u00e0 Lyon.<\/p>\n<p>L&rsquo;acc\u00e8s \u00e9quitable aux soins de sant\u00e9 est un droit fondamental des patients et a \u00e9t\u00e9 l&rsquo;une des principales priorit\u00e9s de l&rsquo;EPF depuis la fondation de notre organisation. C&rsquo;est dans le cadre de nos travaux sur La Directive 2011\/24\/UE relative aux droits des patients en mati\u00e8re de soins de sant\u00e9 transfrontaliers que nous sommes entr\u00e9s en contact avec M. Pakter et Mme \u2588\u2588\u2588\u2588\u2588\u2588\u2588. Ils ont donn\u00e9 un excellent aper\u00e7u de la situation choquante \u00e0 laquelle ils ont \u00e9t\u00e9 confront\u00e9s apr\u00e8s que leur fille ait \u00e9t\u00e9 diagnostiqu\u00e9e avec le rare Syndrome de Pierre Robin.<\/p>\n<p>Leur diff\u00e9rend avec la CPAM se r\u00e9sume \u00e0 ce qui suit. La CPAM a rejet\u00e9 le transfert de Lysiane \u00e0 l&rsquo;h\u00f4pital universitaire de T\u00fcbingen en Allemagne, arguant que le traitement fran\u00e7ais &#8211; qui consiste \u00e0 brancher le nouveau-n\u00e9 \u00e0 une machine de ventilation et \u00e0 le maintenir dans une unit\u00e9 de soins intensifs pour une hospitalisation de longue dur\u00e9e \u2013 est \u00ab\u00a0un traitement identique ou pr\u00e9sentant le m\u00eame degr\u00e9 d\u2019efficacit\u00e9\u00a0\u00bb que le traitement TPP hautement sp\u00e9cialis\u00e9 offert \u00e0 T\u00fcbingen. Ce dernier non seulement supprime l&rsquo;obstruction des voies respiratoires sup\u00e9rieures du b\u00e9b\u00e9, mais corrige en m\u00eame temps sa cause anatomique sous-jacente, la glossoptose, sans chirurgie et sans hospitalisation \u00e0 long terme. Affirmer que ces traitements sont identiques ou pr\u00e9sentent le m\u00eame degr\u00e9 d\u2019efficacit\u00e9 est une affirmation surprenante, c&rsquo;est le moins qu&rsquo;on puisse dire. Ce qui est encore plus surprenant, c&rsquo;est le refus constant de la CPAM de revoir son \u00e9valuation, malgr\u00e9 le soutien institutionnel que M. Pakter et Mme \u2588\u2588\u2588\u2588\u2588\u2588\u2588 ont re\u00e7u.<\/p>\n<p>Nous n&rsquo;avons pas besoin de r\u00e9p\u00e9ter l&rsquo;analyse juridique et m\u00e9dicale de leur situation, bas\u00e9e sur la Directive de l&rsquo;UE et sa transposition en droit fran\u00e7ais, fournie de mani\u00e8re compr\u00e9hensible par une lettre de l&rsquo;organisation membre de l&rsquo;EPF, EURORDIS \u2013 Rare Disease Europe dat\u00e9e du 17 novembre 2017 et adress\u00e9e \u00e0 la CPAM. De cette analyse, il est clair que le droit d&rsquo;acc\u00e8s aux soins a \u00e9t\u00e9 viol\u00e9, et que l&rsquo;\u00e9valuation de la CPAM est non seulement contraire aux dispositions de la Directive europ\u00e9enne et de la loi fran\u00e7aise de mise en \u0153uvre, mais aussi \u00e0 l&rsquo;esprit g\u00e9n\u00e9ral de la Directive et les avantages que le partage d&rsquo;expertise entre \u00c9tats membres peut avoir. Surtout dans le domaine des maladies rares, cela est, bien s\u00fbr, de la plus haute importance.<\/p>\n<p>SOLVIT, un r\u00e9seau d&rsquo;administrations nationales qui vise \u00e0 trouver des solutions rapides et pragmatiques aux probl\u00e8mes rencontr\u00e9s par les citoyens lorsque le droit de l&rsquo;UE n&rsquo;est pas correctement appliqu\u00e9 par les autorit\u00e9s nationales, est d&rsquo;accord avec l&rsquo;\u00e9valuation juridique de M. Pakter et de Mme \u2588\u2588\u2588\u2588\u2588\u2588\u2588 et d\u2019essayer de les aider \u00e0 surmonter les obstacles inutiles auxquels ils sont confront\u00e9s.<\/p>\n<p>Mme Fran\u00e7oise Grosset\u00eate, membre \u00e9minente du Parlement europ\u00e9en, a \u00e9galement exprim\u00e9 son soutien \u00e0 M. Pakter et \u00e0 Mme \u2588\u2588\u2588\u2588\u2588\u2588\u2588. Dans sa lettre du 18 d\u00e9cembre 2017 \u00e0 la ministre fran\u00e7aise des Affaires sociales, de la Sant\u00e9 et des Droits de la Femme, elle exhorte la CPAM \u00e0 accepter leur demande et \u00e0 faire reconna\u00eetre leurs droits en vertu de la Directive. En tant que rapporteur du Parlement europ\u00e9en pour cette l\u00e9gislation, Mme Grosset\u00eate a une connaissance approfondie de la l\u00e9gislation et des droits qu&rsquo;elle accorde aux citoyens.<\/p>\n<p>Nous souhaitons ajouter notre voix \u00e0 ce qui pr\u00e9c\u00e8de et vous demander de bien vouloir mettre fin \u00e0 cette lutte inutile des parents de Lysiane pour acc\u00e9der \u00e0 un traitement de qualit\u00e9 pour leur fille, fond\u00e9 sur un d\u00e9ni non fond\u00e9 des droits du patient qui viole \u00e0 la fois le droit europ\u00e9en et fran\u00e7ais.<\/p>\n<p>Cordialement,<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-148 size-thumbnail\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Nicole_EPF_sig-80x80.png\" alt=\"\" width=\"80\" height=\"80\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Nicole_EPF_sig-80x80.png 80w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Nicole_EPF_sig-36x36.png 36w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Nicole_EPF_sig-180x177.png 180w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Nicole_EPF_sig-120x120.png 120w\" sizes=\"auto, (max-width: 80px) 100vw, 80px\" \/><\/p>\n<p>Nicola Bedlington<br \/>\nSecr\u00e9taire G\u00e9n\u00e9rale d\u2019EPF<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-150 size-thumbnail\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Marco_EPF_sig-80x80.png\" alt=\"\" width=\"80\" height=\"80\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Marco_EPF_sig-80x80.png 80w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Marco_EPF_sig-36x36.png 36w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/Marco_EPF_sig-120x120.png 120w\" sizes=\"auto, (max-width: 80px) 100vw, 80px\" \/><\/p>\n<p>Marco Greco<br \/>\nPresident d\u2019 EPF<\/p>\n<p>En annexe:<br \/>\n1) Lettre d\u2019EURORDIS du 17 novembre 2017<br \/>\n2) Lettre de Mme Fran\u00e7oise Grosset\u00eate du 18 d\u00e9cembre 2017<\/p>\n<p>Note de bas de page 1: s&rsquo;il vous pla\u00eet voir: http:\/\/avantetapres.com\/<\/p>\n<p><!--5c2728de--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Le Forum europ\u00e9en des patients (The European Patients\u2019 Forum) est la plus grande organisation m\u00e8re de d\u00e9fense des patients en Europe, et un acteur cl\u00e9 dans la r\u00e9daction de La Directive 2011\/24\/UE sur les soins de sant\u00e9 transfrontaliers. Ils ont \u00e9crit cette lettre ci-dessous, et ils l&rsquo;ont envoy\u00e9e directement au pr\u00e9sident fran\u00e7ais, le pr\u00e9sident Macron.<\/p>\n","protected":false},"author":1,"featured_media":528,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[567],"tags":[],"class_list":["post-562","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 SEO v28.8) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Syndrome de Pierre Robin - maladie rare; traitements; droit de l&#039;UE.<\/title>\n<meta name=\"description\" content=\"Un traitement allemand s\u00fbr, \u00e9prouv\u00e9 et rentable, refus\u00e9 \u00e0 un b\u00e9b\u00e9 fran\u00e7ais atteint du Syndrome de Pierre Robin, maladie rare: violation du droit europ\u00e9en.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Pierre Robin Europe\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/european-patients-forum\\\/\"},\"author\":{\"name\":\"Pierre Robin Europe\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#\\\/schema\\\/person\\\/6f3b2b5350787464f2e25472ec6d3190\"},\"headline\":\"Le Forum europ\u00e9en des patients &#8211; 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