{"id":1205,"date":"2018-10-12T21:57:42","date_gmt":"2018-10-12T19:57:42","guid":{"rendered":"https:\/\/pierrerobineurope.com\/?p=1205"},"modified":"2020-11-27T09:00:41","modified_gmt":"2020-11-27T08:00:41","slug":"troisieme-lettre-a-macron","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/troisieme-lettre-a-macron\/","title":{"rendered":"Une troisi\u00e8me lettre au Pr\u00e9sident Macron"},"content":{"rendered":"<p>Le 12 octobre 2018, nous avons envoy\u00e9 une troisi\u00e8me lettre au Pr\u00e9sident fran\u00e7ais Emmanuel Macron.<br \/>\n<!--more--><\/p>\n<div id=\"attachment_1127\" style=\"width: 610px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-1127\" class=\"wp-image-1127\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-845x321.jpg\" alt=\"\" width=\"600\" height=\"228\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-845x321.jpg 845w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-300x114.jpg 300w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-768x292.jpg 768w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-1030x391.jpg 1030w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-705x268.jpg 705w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3-450x171.jpg 450w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2018\/10\/Macron-3.jpg 1200w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><p id=\"caption-attachment-1127\" class=\"wp-caption-text\">Une troisi\u00e8me lettre au Pr\u00e9sident Macron<\/p><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2fgllm-b94253e2c99a8a288cc4e1a8ea8fbdfc\">\n#top .hr.av-2fgllm-b94253e2c99a8a288cc4e1a8ea8fbdfc{\nmargin-top:10px;\nmargin-bottom:20px;\n}\n.hr.av-2fgllm-b94253e2c99a8a288cc4e1a8ea8fbdfc .hr-inner{\nwidth:100%;\nborder-color:#000000;\n}\n<\/style>\n<div  class='hr av-2fgllm-b94253e2c99a8a288cc4e1a8ea8fbdfc hr-custom  avia-builder-el-0  el_before_av_hr  avia-builder-el-first  hr-center hr-icon-no'><span class='hr-inner inner-border-av-border-fat'><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<p style=\"padding-left: 60px;\">12 octobre 2018<\/p>\n<p style=\"padding-left: 60px;\">Monsieur le Pr\u00e9sident de la R\u00e9publique Fran\u00e7aise<br \/>\n\u00c0 l\u2019attention de M. Fran\u00e7ois-Xavier Lauch<br \/>\nPalais de l\u2019Elys\u00e9e<br \/>\n55 rue du Faubourg Saint-Honor\u00e9<br \/>\n75008 Paris<\/p>\n<p style=\"padding-left: 60px;\">France<\/p>\n<p style=\"padding-left: 60px;\">T\u00e9l\u00e9phone: 01 42 92 81 00<\/p>\n<p style=\"padding-left: 60px;\"><strong>Re: Lysiane Pakter \u2013 un b\u00e9b\u00e9 fran\u00e7ais avec une maladie rare<\/strong><\/p>\n<p style=\"padding-left: 60px;\">Cher M. Lauch,<\/p>\n<p style=\"padding-left: 60px;\">Je vous \u00e9cris en r\u00e9ponse \u00e0 votre lettre du 22 ao\u00fbt 2018, r\u00e9f\u00e9rence n\u00b0 PDR\/SCP\/BCP\/BR\/B093085, concernant notre fille Lysiane Pakter, atteinte d\u2019une maladie rare. Le 19 mai 2017, l\u2019Assurance Maladie a refus\u00e9 \u00e0 Lysiane son droit l\u00e9gal d\u2019obtenir un traitement s\u00fbr et m\u00e9dicalement prouv\u00e9 pour sa maladie rare en Allemagne. Le rejet de l\u2019Assurance Maladie \u00e9tait une violation de la loi europ\u00e9enne sur les soins de sant\u00e9 transfrontaliers, un fait confirm\u00e9 par un nombre d\u2019organisations internationales et d\u2019experts neutres et ind\u00e9pendants.<\/p>\n<p style=\"padding-left: 60px;\">Votre lettre sugg\u00e8re que le Pr\u00e9sident Macron n\u2019\u00e9tait pas au courant de la situation concernant notre fille Lysiane jusqu\u2019\u00e0 pr\u00e9sent. Cependant, en janvier de cette ann\u00e9e, le\u00a0\u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb, la plus grande organisation m\u00e8re de d\u00e9fense des patients de toute l\u2019UE, a envoy\u00e9 une lettre au Pr\u00e9sident Macron pour l\u2019alerter sp\u00e9cifiquement. Le 16 janvier 2018, le \u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb, qui qualifie cette situation de <em>\u00ab\u00a0choquante\u00a0\u00bb<\/em>, a \u00e9crit au Pr\u00e9sident Macron. Il souligne que le r\u00e9seau SOLVIT de la Commission europ\u00e9enne a convenu avec nous, les parents de Lysiane: le rejet par l\u2019Assurance Maladie de notre demande pour des soins de sant\u00e9 transfrontaliers en Allemagne \u00e9tait une violation du droit europ\u00e9enne (l\u2019affaire SOLVIT n\u00b0 2569\/17\/DE). Le \u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb a \u00e9galement inclus, dans sa lettre au Pr\u00e9sident Macron, deux lettres d\u2019appui suppl\u00e9mentaires concernant notre fille Lysiane: (1) une lettre dat\u00e9e du 17 novembre 2017 d\u2019EURORDIS, la plus grande organisation de patients atteints de maladies rares dans l\u2019UE; EURORDIS s\u2019est engag\u00e9 \u00e0 nous accompagner, les parents de Lysiane, devant les tribunaux, jusqu\u2019\u00e0 la Cour de justice de l\u2019Union europ\u00e9enne, afin d\u2019annuler le rejet ill\u00e9gal de l\u2019Assurance Maladie; et (2) une lettre dat\u00e9e du 18 d\u00e9cembre 2017 de Mme Fran\u00e7oise Grosset\u00eate, un membre senior du Parlement europ\u00e9en. Mme Grosset\u00eate \u00e9tait le rapporteur sp\u00e9cial du Parlement europ\u00e9en pour la Directive 2011 sur les soins de sant\u00e9 transfrontaliers; elle conna\u00eet cette loi. Dans sa lettre d\u2019appui, Mme Grosset\u00eate confirme que le rejet de l\u2019Assurance Maladie \u00e9tait juridiquement non fond\u00e9 et elle appelle cette situation <em>\u00ab\u00a0inacceptable\u00a0\u00bb<\/em>.<\/p>\n<p style=\"padding-left: 60px;\">Je peux v\u00e9rifier que le Pr\u00e9sident Macron \u00e9tait au courant pour notre fille Lysiane et que le Pr\u00e9sident Macron avait re\u00e7u ces trois lettres concernant Lysiane il y a presque un an, parce que vous-m\u00eame, au nom du Pr\u00e9sident Macron, avez personnellement r\u00e9pondu au \u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb. Dans votre lettre du 9 f\u00e9vrier 2018, r\u00e9f\u00e9rence n\u00b0 PDR\/SCP\/BEAR\/B015095, vous avez dit au \u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb de <em>\u00ab\u00a0Soyez assur\u00e9e de toute l\u2019attention port\u00e9e par le Chef de l\u2019\u00c9tat \u00e0 la situation de Lysiane Pakter.\u00a0\u00bb<\/em> Dans cette m\u00eame lettre, vous avez promis au \u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb qu\u2019ils seraient tenus inform\u00e9s du cas de Lysiane. Malheureusement, ils n\u2019ont rien entendu depuis. Le \u00ab\u00a0European Patients\u2019 Forum\u00a0\u00bb a r\u00e9cemment fait suite en pr\u00e9sentant un rapport officiel sur le cas de Lysiane \u00e0 une Commission Parlementaire, charg\u00e9 par le Parlement europ\u00e9en d\u2019\u00e9tudier la mise en \u0153uvre de la Directive 2011 sur les soins de sant\u00e9 transfrontaliers. Le rejet par l\u2019Assurance Maladie du droit de notre fille Lysiane d\u2019obtenir un traitement hautement sp\u00e9cialis\u00e9 et m\u00e9dicalement prouv\u00e9 pour sa maladie rare en Allemagne repr\u00e9sente un manquement notable et particuli\u00e8rement honteux \u00e0 un \u00c9tat membre de l\u2019UE de respecter la Directive 2011. En tant que tel, le cas de Lysiane maintenant fait partie du dossier documentaire officiel du Parlement europ\u00e9en.<\/p>\n<p style=\"padding-left: 60px;\">Mme Grosset\u00eate a \u00e9galement fait un suivi. Mme Grosset\u00eate, qui conna\u00eet tr\u00e8s bien la Directive 2011, a r\u00e9cemment envoy\u00e9 une lettre d\u00e9taill\u00e9 par rapport \u00e0 notre fille Lysiane \u00e0 la commissaire de la sant\u00e9 de l\u2019Union europ\u00e9enne, Dr Vytenis Andriukaitis, informant la commissaire directement de cette violation flagrant de la loi europ\u00e9enne sur les soins de sant\u00e9 transfrontaliers. Mme Grosset\u00eate a \u00e9galement \u00e9crit une lettre distincte \u00e0 Mme Marie Fontanel, conseill\u00e8re en sant\u00e9 du Pr\u00e9sident Macron.<\/p>\n<p style=\"padding-left: 60px;\">Monsieur Lauch, ni vous ni le Pr\u00e9sident Macron ne connaissez notre fille Lysiane, mais vous en savez assez: Lysiane est un b\u00e9b\u00e9 fran\u00e7ais; elle souffre d\u2019une maladie rare; l\u2019Assurance Maladie, malgr\u00e9 le droit de l\u2019Union europ\u00e9enne et au m\u00e9pris de toute logique, a ill\u00e9galement rejet\u00e9 le droit de Lysiane de recevoir un traitement s\u00fbr, hautement sp\u00e9cialis\u00e9, m\u00e9dicalement prouv\u00e9 et rentable en Allemagne. Ce rejet ill\u00e9gal doit \u00eatre annul\u00e9. Plus ceci prendra du temps, plus ceci nuira au gouvernement de Macron \u2013 et \u00e0 cette date tardive, le Pr\u00e9sident Macron ne peut plus dire qu\u2019il ne le savait pas.<\/p>\n<p style=\"padding-left: 60px;\">Je joins \u00e0 nouveau une copie de notre lettre sinc\u00e8re et d\u00e9taill\u00e9e au Pr\u00e9sident Macron, dat\u00e9e du 23 f\u00e9vrier 2018, concernant notre fille Lysiane. Nous demandons respectueusement \u00e0 Mme Fontanel et \u00e0 vous-m\u00eame de travailler avec le Pr\u00e9sident Macron pour enfin r\u00e9soudre cette situation et mettre un terme \u00e0 ces souffrances suppl\u00e9mentaires et inutiles auxquelles nous sommes confront\u00e9s en tant que parents. Je vous remercie.<\/p>\n<p style=\"padding-left: 60px;\">Cordialement,<\/p>\n<p style=\"padding-left: 60px;\">Philippe Pakter<br \/>\n2 rue G\u00e9rard Maire<br \/>\n69100 Villeurbanne<br \/>\nFrance<\/p>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2fgllm-63e1ba8d0c3537181a63cba7d5487f29\">\n#top .hr.av-2fgllm-63e1ba8d0c3537181a63cba7d5487f29{\nmargin-top:10px;\nmargin-bottom:30px;\n}\n.hr.av-2fgllm-63e1ba8d0c3537181a63cba7d5487f29 .hr-inner{\nwidth:100%;\nborder-color:#000000;\n}\n<\/style>\n<div  class='hr av-2fgllm-63e1ba8d0c3537181a63cba7d5487f29 hr-custom  avia-builder-el-1  el_after_av_hr  avia-builder-el-last  hr-center hr-icon-no'><span class='hr-inner inner-border-av-border-fat'><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Le 12 octobre 2018, nous avons envoy\u00e9 une troisi\u00e8me lettre au Pr\u00e9sident fran\u00e7ais Emmanuel Macron.<\/p>\n","protected":false},"author":1,"featured_media":1128,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[567],"tags":[],"class_list":["post-1205","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; 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