{"id":547,"date":"2017-11-17T00:11:44","date_gmt":"2017-11-16T23:11:44","guid":{"rendered":"https:\/\/pierrerobineurope.com?p=547"},"modified":"2020-11-27T08:56:30","modified_gmt":"2020-11-27T07:56:30","slug":"eurordis","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/eurordis\/","title":{"rendered":"EURORDIS &#8211; lettre de soutien"},"content":{"rendered":"<p>L&rsquo;Organisation europ\u00e9enne pour les maladies rares (EURORDIS) est la plus grande organisation de patients atteints de <em>maladies rares<\/em> dans l&rsquo;UE. EURORDIS a envoy\u00e9 une lettre de soutien tr\u00e8s d\u00e9taill\u00e9e \u00e0 l\u2019Assurance Maladie, expliquant pourquoi, eux aussi, le rejet \u00e9tait contraire au droit de l\u2019UE. EURORDIS s\u2019est engag\u00e9 \u00e0 nous accompagner, les parents de Lysiane, devant la Cour de justice de l\u2019Union europ\u00e9enne.<!--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=eyJ1cmwiOiJodHRwczpcL1wvcGllcnJlcm9iaW5ldXJvcGUuY29tXC93cC1jb250ZW50XC91cGxvYWRzXC8yMDE4XC8wM1wvRVVST1JESVMtZnItbGV0dGVyLW9mLXN1cHBvcnQucGRmIiwidGl0bGUiOiJFVVJPUkRJUy1mci1sZXR0ZXItb2Ytc3VwcG9ydCIsImluZGV4IjoxLCJwZGZJRCI6MzQxfQ\"\n\t\t\t\ttitle=\"EURORDIS-fr-letter-of-support\"\t\t\t\tdata-pdf-id=\"341\"\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","protected":false},"excerpt":{"rendered":"<p>L&rsquo;Organisation europ\u00e9enne pour les maladies rares (EURORDIS) est la plus grande organisation de patients atteints de maladies rares dans l&rsquo;UE. EURORDIS a envoy\u00e9 une lettre de soutien tr\u00e8s d\u00e9taill\u00e9e \u00e0 l\u2019Assurance Maladie, expliquant pourquoi, eux aussi, le rejet \u00e9tait contraire au droit de l\u2019UE. EURORDIS s\u2019est engag\u00e9 \u00e0 nous accompagner, les parents de Lysiane, devant la Cour de justice de l\u2019Union europ\u00e9enne.<\/p>\n","protected":false},"author":1,"featured_media":1055,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[567],"tags":[],"class_list":["post-547","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<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\\\/eurordis\\\/\"},\"author\":{\"name\":\"Pierre Robin Europe\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#\\\/schema\\\/person\\\/6f3b2b5350787464f2e25472ec6d3190\"},\"headline\":\"EURORDIS &#8211; lettre de soutien\",\"datePublished\":\"2017-11-16T23:11:44+00:00\",\"dateModified\":\"2020-11-27T07:56:30+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/eurordis\\\/\"},\"wordCount\":85,\"publisher\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/pierrerobineurope.com\\\/wp-content\\\/uploads\\\/2018\\\/10\\\/EURORDIS_fr.jpg\",\"articleSection\":[\"Mise \u00e0 jour\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/eurordis\\\/\",\"url\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/\",\"name\":\"Syndrome de Pierre Robin - maladie rare; traitements; droit de l'UE.\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/pierrerobineurope.com\\\/wp-content\\\/uploads\\\/2018\\\/10\\\/EURORDIS_fr.jpg\",\"datePublished\":\"2017-11-16T23:11:44+00:00\",\"dateModified\":\"2020-11-27T07:56:30+00:00\",\"description\":\"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.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#primaryimage\",\"url\":\"https:\\\/\\\/pierrerobineurope.com\\\/wp-content\\\/uploads\\\/2018\\\/10\\\/EURORDIS_fr.jpg\",\"contentUrl\":\"https:\\\/\\\/pierrerobineurope.com\\\/wp-content\\\/uploads\\\/2018\\\/10\\\/EURORDIS_fr.jpg\",\"width\":1200,\"height\":456},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/lettre-au-president-macron\\\/informations-generales\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/accueil\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"EURORDIS &#8211; lettre de soutien\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#website\",\"url\":\"https:\\\/\\\/pierrerobineurope.com\\\/\",\"name\":\"Pierre Robin Europe\",\"description\":\"The rare disease, Pierre Robin Sequence\",\"publisher\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/pierrerobineurope.com\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#organization\",\"name\":\"Stichting Pierre Robin Europe\",\"url\":\"https:\\\/\\\/pierrerobineurope.com\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/pierrerobineurope.com\\\/wp-content\\\/uploads\\\/2018\\\/03\\\/logo-pr-eu-drk-crp.png\",\"contentUrl\":\"https:\\\/\\\/pierrerobineurope.com\\\/wp-content\\\/uploads\\\/2018\\\/03\\\/logo-pr-eu-drk-crp.png\",\"width\":217,\"height\":139,\"caption\":\"Stichting Pierre Robin Europe\"},\"image\":{\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/PierreRobinEurope\",\"https:\\\/\\\/x.com\\\/PhilippePakter\",\"https:\\\/\\\/www.linkedin.com\\\/in\\\/pakter\"]},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#\\\/schema\\\/person\\\/6f3b2b5350787464f2e25472ec6d3190\",\"name\":\"Pierre Robin Europe\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/7f2a21026f5832c13bfb3a3d0e9ce1becda37e50a01066bdc2406ad854b59730?s=96&d=mm&r=g\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/7f2a21026f5832c13bfb3a3d0e9ce1becda37e50a01066bdc2406ad854b59730?s=96&d=mm&r=g\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/7f2a21026f5832c13bfb3a3d0e9ce1becda37e50a01066bdc2406ad854b59730?s=96&d=mm&r=g\",\"caption\":\"Pierre Robin Europe\"}}]}<\/script>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"Syndrome de Pierre Robin - maladie rare; traitements; droit de l'UE.","description":"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.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/","twitter_misc":{"\u00c9crit par":"Pierre Robin Europe"},"schema":{"@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\/eurordis\/"},"author":{"name":"Pierre Robin Europe","@id":"https:\/\/pierrerobineurope.com\/#\/schema\/person\/6f3b2b5350787464f2e25472ec6d3190"},"headline":"EURORDIS &#8211; lettre de soutien","datePublished":"2017-11-16T23:11:44+00:00","dateModified":"2020-11-27T07:56:30+00:00","mainEntityOfPage":{"@id":"https:\/\/pierrerobineurope.com\/fr\/eurordis\/"},"wordCount":85,"publisher":{"@id":"https:\/\/pierrerobineurope.com\/#organization"},"image":{"@id":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/#primaryimage"},"thumbnailUrl":"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/EURORDIS_fr.jpg","articleSection":["Mise \u00e0 jour"],"inLanguage":"fr-FR"},{"@type":"WebPage","@id":"https:\/\/pierrerobineurope.com\/fr\/eurordis\/","url":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/","name":"Syndrome de Pierre Robin - maladie rare; traitements; droit de l'UE.","isPartOf":{"@id":"https:\/\/pierrerobineurope.com\/#website"},"primaryImageOfPage":{"@id":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/#primaryimage"},"image":{"@id":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/#primaryimage"},"thumbnailUrl":"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/EURORDIS_fr.jpg","datePublished":"2017-11-16T23:11:44+00:00","dateModified":"2020-11-27T07:56:30+00:00","description":"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.","breadcrumb":{"@id":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/#primaryimage","url":"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/EURORDIS_fr.jpg","contentUrl":"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/EURORDIS_fr.jpg","width":1200,"height":456},{"@type":"BreadcrumbList","@id":"https:\/\/pierrerobineurope.com\/fr\/lettre-au-president-macron\/informations-generales\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/pierrerobineurope.com\/fr\/accueil\/"},{"@type":"ListItem","position":2,"name":"EURORDIS &#8211; lettre de soutien"}]},{"@type":"WebSite","@id":"https:\/\/pierrerobineurope.com\/#website","url":"https:\/\/pierrerobineurope.com\/","name":"Pierre Robin Europe","description":"The rare disease, Pierre Robin Sequence","publisher":{"@id":"https:\/\/pierrerobineurope.com\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/pierrerobineurope.com\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/pierrerobineurope.com\/#organization","name":"Stichting Pierre Robin Europe","url":"https:\/\/pierrerobineurope.com\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/pierrerobineurope.com\/#\/schema\/logo\/image\/","url":"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/logo-pr-eu-drk-crp.png","contentUrl":"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/logo-pr-eu-drk-crp.png","width":217,"height":139,"caption":"Stichting Pierre Robin Europe"},"image":{"@id":"https:\/\/pierrerobineurope.com\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/PierreRobinEurope","https:\/\/x.com\/PhilippePakter","https:\/\/www.linkedin.com\/in\/pakter"]},{"@type":"Person","@id":"https:\/\/pierrerobineurope.com\/#\/schema\/person\/6f3b2b5350787464f2e25472ec6d3190","name":"Pierre Robin Europe","image":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/secure.gravatar.com\/avatar\/7f2a21026f5832c13bfb3a3d0e9ce1becda37e50a01066bdc2406ad854b59730?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/7f2a21026f5832c13bfb3a3d0e9ce1becda37e50a01066bdc2406ad854b59730?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/7f2a21026f5832c13bfb3a3d0e9ce1becda37e50a01066bdc2406ad854b59730?s=96&d=mm&r=g","caption":"Pierre Robin Europe"}}]}},"_links":{"self":[{"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/posts\/547","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/comments?post=547"}],"version-history":[{"count":0,"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/posts\/547\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/media\/1055"}],"wp:attachment":[{"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/media?parent=547"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/categories?post=547"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/pierrerobineurope.com\/fr\/wp-json\/wp\/v2\/tags?post=547"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}