{"id":553,"date":"2017-12-18T00:32:23","date_gmt":"2017-12-17T23:32:23","guid":{"rendered":"https:\/\/pierrerobineurope.com?p=553"},"modified":"2020-11-27T08:57:37","modified_gmt":"2020-11-27T07:57:37","slug":"francoise-grossetete","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/francoise-grossetete\/","title":{"rendered":"Fran\u00e7oise Grosset\u00eate, d\u00e9put\u00e9e du Parlement europ\u00e9enne &#8211; lettre de soutien"},"content":{"rendered":"<p>Mme Fran\u00e7oise Grosset\u00eate, une d\u00e9put\u00e9e du Parlement europ\u00e9en, a une formation en droit \u2013 et Mme Grosset\u00eate a \u00e9t\u00e9 nomm\u00e9e Rapporteur sp\u00e9cial du Parlement europ\u00e9en pour La Directive 2011\/24\/UE sur les soins de sant\u00e9 transfrontaliers. Mme Grosset\u00eate conna\u00eet la loi sur les soins de sant\u00e9 transfrontaliers. Au nom de notre fille Lysiane, elle a envoy\u00e9 la lettre ci-dessous directement \u00e0 la ministre fran\u00e7aise de la Sant\u00e9, Agn\u00e8s Buzyn, en pr\u00e9cisant que cette situation est \u00ab\u00a0inacceptable\u00a0\u00bb, et que le rejet \u00e9tait juridiquement non fond\u00e9.<\/p>\n<p><!--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=eyJ1cmwiOiJodHRwczpcL1wvcGllcnJlcm9iaW5ldXJvcGUuY29tXC93cC1jb250ZW50XC91cGxvYWRzXC8yMDE4XC8wM1wvRnJhbmNvaXNlLUdyb3NzZXRldGUtZnItbGV0dGVyLW9mLXN1cHBvcnQtcmRjdC5wZGYiLCJ0aXRsZSI6IkZyYW5jb2lzZS1Hcm9zc2V0ZXRlLWZyLWxldHRlci1vZi1zdXBwb3J0LXJkY3QiLCJpbmRleCI6MSwicGRmSUQiOjM0OH0\"\n\t\t\t\ttitle=\"Francoise-Grossetete-fr-letter-of-support-rdct\"\t\t\t\tdata-pdf-id=\"348\"\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<div  class='hr av-fcdgh-19711d7ca52f42b49fbaa41f32c9db15 hr-default  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<p style=\"text-align: center;\">Voici le texte de la lettre.<\/p>\n<div  class='hr av-8ahsp-20cf1b01a4d11c4d187ce16abc8b3c73 hr-default  avia-builder-el-1  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=\"alignright wp-image-277 size-medium\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/european-parliament-logo-300x158.jpg\" alt=\"\" width=\"300\" height=\"158\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/european-parliament-logo-300x158.jpg 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/european-parliament-logo-450x236.jpg 450w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/03\/european-parliament-logo.jpg 600w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/>Bruxelles, le 18 d\u00e9cembre 2017<\/p>\n<p>Madame Agn\u00e8s BUZYN<br \/>\nMinistre<br \/>\nMinist\u00e8re des Affaires sociales, de la Sant\u00e9 et des Droits des femmes<br \/>\n14, avenue Duquesne<br \/>\n75350 Paris 07 SP<br \/>\nFRANCE<\/p>\n<p>Madame la Ministre,<\/p>\n<p>Je souhaite par cette lettre vous alerter sur le cas tr\u00e8s urgent de Lysiane Pakter, n\u00e9e le 29 mars 2017 et diagnostiqu\u00e9e avec un cas de maladie rare appel\u00e9e S\u00e9quence de Pierre Robin. Pour traiter cette pathologie, Lysiane doit recevoir un traitement hautement sp\u00e9cialis\u00e9, dont le Centre de R\u00e9f\u00e9rence Orphanet pour cette maladie rare a confirm\u00e9 qu\u2019il n\u2019\u00e9tait disponible qu\u2019en Allemagne.<\/p>\n<p>Au regard de la Directive 2011\/24\/UE relative \u00e0 l\u2019application des droits des patients en mati\u00e8re de soins de sant\u00e9 transfrontaliers, les parents de Lysiane, M. Pakter et \u2588\u2588\u2588\u2588\u2588\u2588\u2588, ont donc tent\u00e9 d\u2019obtenir comme il se doit une autorisation pr\u00e9alable pour ces soins, via le formulaire S2.<\/p>\n<p>Malheureusement, cette demande a \u00e9t\u00e9 rejet\u00e9e par la Caisse Primaire d\u2019Assurance Maladie (CPAM) de Lyon, les parents se heurtant \u00e0 la m\u00e9connaissance des proc\u00e9dures et des textes existants en mati\u00e8re de soins de sant\u00e9 transfrontaliers de la part de l\u2019administration. \u00c0 ce stade, l\u2019affaire est toujours en cours de r\u00e9vision administrative interne par la CPAM.<\/p>\n<p>Estimant que la d\u00e9cision de la CPAM viole le droit europ\u00e9en, les parents ont saisi le r\u00e9seau SOLVIT (num\u00e9ro de dossier 2569\/17\/DE), qui a reconnu que le refus d\u2019autorisation pr\u00e9alable en l\u2019esp\u00e8ce \u00e9tait contraire aux textes en vigueur.<\/p>\n<p>Pendant que ces proc\u00e9dures suivent leur cours, et face \u00e0 l\u2019urgence, Lysiane a d\u00fb \u00eatre transf\u00e9r\u00e9e en Allemagne sans attendre le retour de la CPAM, car le traitement permettant de corriger le probl\u00e8me doit \u00eatre r\u00e9alis\u00e9 le plus t\u00f4t possible.<\/p>\n<p>Face \u00e0 cette situation inacceptable, et sensible \u00e0 la d\u00e9tresse de cette famille, j\u2019en appelle \u00e0 votre soutien et \u00e0 votre aide afin de saisir les services comp\u00e9tents de la S\u00e9curit\u00e9 Sociale pour faire avancer ce dossier et assurer la bonne application de la Directive 2011\/24\/UE concernant les droits des patients en mati\u00e8re de soins de sant\u00e9 transfrontaliers.<\/p>\n<p>Vous remerciant par avance de l\u2019attention que vous voudrez bien accorder \u00e0 cette demande, je reste \u00e0 votre enti\u00e8re disposition et vous prie d\u2019agr\u00e9er, Madame la Ministre, l\u2019assurance de ma tr\u00e8s haute consid\u00e9ration.<\/p>\n<p>Je compte sur vous.<\/p>\n<p>Fran\u00e7oise GROSSET\u00caTE<br \/>\nD\u00e9put\u00e9e europ\u00e9enne<br \/>\nVice-Pr\u00e9sident du Groupe PPE<br \/>\nParlement europ\u00e9en<br \/>\nRue Wiertz, B-1047<br \/>\nBRUXELLES<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Mme Fran\u00e7oise Grosset\u00eate, une d\u00e9put\u00e9e du Parlement europ\u00e9en, a une formation en droit \u2013 et Mme Grosset\u00eate a \u00e9t\u00e9 nomm\u00e9e Rapporteur sp\u00e9cial du Parlement europ\u00e9en pour La Directive 2011\/24\/UE sur les soins de sant\u00e9 transfrontaliers. Mme Grosset\u00eate conna\u00eet la loi sur les soins de sant\u00e9 transfrontaliers. Au nom de notre fille Lysiane, elle a envoy\u00e9 la lettre ci-dessous directement \u00e0 la ministre fran\u00e7aise de la Sant\u00e9, Agn\u00e8s Buzyn, en pr\u00e9cisant que cette situation est \u00ab\u00a0inacceptable\u00a0\u00bb, et que le rejet \u00e9tait juridiquement non fond\u00e9.<\/p>\n","protected":false},"author":1,"featured_media":529,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[567],"tags":[],"class_list":["post-553","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=\"3 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\\\/francoise-grossetete\\\/\"},\"author\":{\"name\":\"Pierre Robin Europe\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/#\\\/schema\\\/person\\\/6f3b2b5350787464f2e25472ec6d3190\"},\"headline\":\"Fran\u00e7oise Grosset\u00eate, d\u00e9put\u00e9e du Parlement europ\u00e9enne &#8211; 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