{"id":443,"date":"2018-03-28T18:02:06","date_gmt":"2018-03-28T16:02:06","guid":{"rendered":"https:\/\/pierrerobineurope.com?page_id=443"},"modified":"2025-01-27T18:09:42","modified_gmt":"2025-01-27T17:09:42","slug":"contact","status":"publish","type":"page","link":"https:\/\/pierrerobineurope.com\/fr\/contact\/","title":{"rendered":"Contact"},"content":{"rendered":"<section  class='av_textblock_section av-384wb-21a2e3e6e20ba648ea7602d51dfb6d30 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h3 style=\"text-align: center;\">Contactez nous<\/h3>\n<p>Veuillez nous contacter en remplissant le formulaire ci-dessous. Nous vous r\u00e9pondrons dans les plus brefs d\u00e9lais.<\/p>\n<script>\nvar gform;gform||(document.addEventListener(\"gform_main_scripts_loaded\",function(){gform.scriptsLoaded=!0}),document.addEventListener(\"gform\/theme\/scripts_loaded\",function(){gform.themeScriptsLoaded=!0}),window.addEventListener(\"DOMContentLoaded\",function(){gform.domLoaded=!0}),gform={domLoaded:!1,scriptsLoaded:!1,themeScriptsLoaded:!1,isFormEditor:()=>\"function\"==typeof InitializeEditor,callIfLoaded:function(o){return!(!gform.domLoaded||!gform.scriptsLoaded||!gform.themeScriptsLoaded&&!gform.isFormEditor()||(gform.isFormEditor()&&console.warn(\"The use of gform.initializeOnLoaded() is deprecated in the form editor context and will be removed in Gravity Forms 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class='gform-footer gform_footer top_label'> <button type='submit' id='gform_submit_button_2' class='gform_button button' onclick='gform.submission.handleButtonClick(this);' data-submission-type='submit' >Envoyez votre message<\/button> \n            <input type='hidden' class='gform_hidden' name='gform_submission_method' data-js='gform_submission_method_2' value='postback' \/>\n            <input type='hidden' class='gform_hidden' name='gform_theme' data-js='gform_theme_2' id='gform_theme_2' value='orbital' \/>\n            <input type='hidden' class='gform_hidden' name='gform_style_settings' data-js='gform_style_settings_2' id='gform_style_settings_2' value='[]' \/>\n            <input type='hidden' class='gform_hidden' name='is_submit_2' value='1' \/>\n            <input type='hidden' class='gform_hidden' name='gform_submit' value='2' \/>\n            \n            <input type='hidden' class='gform_hidden' name='gform_currency' data-currency='EUR' 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id='gform_target_page_number_2' value='0' \/>\n            <input type='hidden' autocomplete='off' class='gform_hidden' name='gform_source_page_number_2' id='gform_source_page_number_2' value='1' \/>\n            <input type='hidden' name='gform_field_values' value='' \/>\n            \n        <\/div>\n                        <\/form>\n                        <\/div>\n<\/div><\/section>\n<section  class='av_textblock_section av-15i45f-5e5dbcee3b984b248712ea4497e479b9 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" >\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-1n31b-8bbbface03af06b8ca1e6a76ac481385\">\n#top .hr.hr-invisible.av-1n31b-8bbbface03af06b8ca1e6a76ac481385{\nheight:10px;\n}\n<\/style>\n<div  class='hr av-1n31b-8bbbface03af06b8ca1e6a76ac481385 hr-invisible  avia-builder-el-2  el_before_av_hr  avia-builder-el-first '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h3 style=\"text-align: center;\">Adh\u00e9sions et Affiliations<\/h3>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-1n31b-3-47f1ef6005a12362e764126c02aead4d\">\n#top .hr.hr-invisible.av-1n31b-3-47f1ef6005a12362e764126c02aead4d{\nheight:10px;\n}\n<\/style>\n<div  class='hr av-1n31b-3-47f1ef6005a12362e764126c02aead4d hr-invisible  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<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-1421 size-full\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/01\/ERN-logo.png\" alt=\"\" width=\"368\" height=\"346\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/01\/ERN-logo.png 368w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/01\/ERN-logo-300x282.png 300w\" sizes=\"auto, (max-width: 368px) 100vw, 368px\" \/><\/p>\n<p>Stichting Pierre Robin Europe participe au r\u00e9seau europ\u00e9en de r\u00e9f\u00e9rence (\u00ab\u00a0ERN\u00a0\u00bb) pour anomalies craniofaciales et des troubles ORL, en tant que groupe de repr\u00e9sentants des patients (\u00ab\u00a0ePAG\u00a0\u00bb). La Commission europ\u00e9enne:<\/p>\n<p>\u00ab\u00a0Les r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence sont des r\u00e9seaux virtuels r\u00e9unissant des prestataires de soins de sant\u00e9 de toute l\u2019Europe. Ils ont pour objectif de s\u2019attaquer \u00e0 des maladies complexes ou rares ou \u00e0 des affections qui n\u00e9cessitent une th\u00e9rapie hautement sp\u00e9cialis\u00e9e et un faisceau de connaissances et de ressources.<\/p>\n<p>L\u2019on estime que 30 millions d\u2019Europ\u00e9ens sont ou seront touch\u00e9s par des maladies rares. L\u2019on en d\u00e9nombre entre 6 000 et 8 000, qui occasionnent souvent des douleurs ou souffrances chroniques et peuvent parfois \u00eatre fatales. Leur incidence est lourde sur la qualit\u00e9 de vie des patients affect\u00e9s \u2013 souvent des enfants.<\/p>\n<p>L\u2019une des caract\u00e9ristiques n\u00e9gatives des maladies rares et des affections complexes r\u00e9side dans la raret\u00e9 et la fragmentation des connaissances sp\u00e9cialis\u00e9es \u00e0 leur \u00e9gard, qui ne sont g\u00e9n\u00e9ralement pas disponibles dans la r\u00e9gion ou le pays du patient concern\u00e9. De nombreux patients ne trouvent donc pas d\u2019explication satisfaisante \u00e0 leurs sympt\u00f4mes, ni d\u2019information en ce qui concerne les diff\u00e9rentes possibilit\u00e9s th\u00e9rapeutiques. En regroupant les connaissances et l\u2019expertise diss\u00e9min\u00e9es dans les diff\u00e9rents pays, les r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence garantiront l\u2019acc\u00e8s des prestataires de soins \u00e0 une r\u00e9serve bien plus vaste de connaissances sp\u00e9cialis\u00e9es. Les patients auront d\u00e8s lors de meilleures chances de recevoir un diagnostic exact et de se voir conseiller le meilleur traitement possible compte tenu de leur probl\u00e8me sp\u00e9cifique.\u00a0\u00bb<\/p>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-144uz-e2bc3692b44db94627afe0b37d6bbf22\">\n#top .hr.hr-invisible.av-144uz-e2bc3692b44db94627afe0b37d6bbf22{\nheight:30px;\n}\n<\/style>\n<div  class='hr av-144uz-e2bc3692b44db94627afe0b37d6bbf22 hr-invisible  avia-builder-el-4  el_after_av_hr  el_before_av_hr '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<p>Stichting Pierre Robin Europe est membre d&rsquo;EURORDIS, la plus grande organisation de d\u00e9fense des droits des patients atteints de maladies rares dans l&rsquo;UE.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-1493 alignnone\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/02\/EURORDIS-member.png\" alt=\"\" width=\"450\" height=\"228\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/02\/EURORDIS-member.png 450w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/02\/EURORDIS-member-300x152.png 300w\" sizes=\"auto, (max-width: 450px) 100vw, 450px\" \/><\/p>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-144uz-2-0024876be4c1e41c0132ae0c87380eb5\">\n#top .hr.hr-invisible.av-144uz-2-0024876be4c1e41c0132ae0c87380eb5{\nheight:30px;\n}\n<\/style>\n<div  class='hr av-144uz-2-0024876be4c1e41c0132ae0c87380eb5 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<p>Stichting Pierre Robin Europe est membre de VSOP (Vereniging Samenwerkende Ouder en Pati\u00ebntenorganisaties) la plus grande organisation de d\u00e9fense des droits des patients atteints de maladies rares aux Pays-Bas.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-1747\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/05\/VSOP-member.png\" alt=\"\" width=\"450\" height=\"120\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/05\/VSOP-member.png 450w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/05\/VSOP-member-300x80.png 300w\" sizes=\"auto, (max-width: 450px) 100vw, 450px\" \/><\/p>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-144uz-1-ce15bf3bb9fc45ffe8888b0ebc52cb71\">\n#top .hr.hr-invisible.av-144uz-1-ce15bf3bb9fc45ffe8888b0ebc52cb71{\nheight:30px;\n}\n<\/style>\n<div  class='hr av-144uz-1-ce15bf3bb9fc45ffe8888b0ebc52cb71 hr-invisible  avia-builder-el-6  el_after_av_hr  avia-builder-el-last '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<p>L&rsquo;Association Pierre Robin Europe, l&rsquo;organisation s\u0153ur de Stichting Pierre Robin Europe, est membre de ProRaris.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-1496 alignnone\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/02\/ProRaris-member.png\" alt=\"\" width=\"400\" height=\"159\" srcset=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/02\/ProRaris-member.png 400w, https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2019\/02\/ProRaris-member-300x119.png 300w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/><\/p>\n<h3 style=\"text-align: center;\">Communaut\u00e9s en ligne et groupes de soutien<\/h3>\n<ul>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/357843197349\/\" target=\"_blank\" rel=\"noopener\">Association Calin Vol\u00e9, Syndrome Pierre Robin<\/a> (fran\u00e7ais)<\/li>\n<li>RareConnect, <a href=\"https:\/\/www.rareconnect.org\/fr\/login?next=\/fr\/community\/pierre-robin-sequence\" target=\"_blank\" rel=\"noopener\">S\u00e9quence de Pierre Robin<\/a> (fran\u00e7ais)<\/li>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/pierrerobinsequence\/\" target=\"_blank\" rel=\"noopener\">Pierre Robin Sequence USA<\/a> (anglais)<\/li>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/193041440726017\/\" target=\"_blank\" rel=\"noopener\">Pierre Robin Sequence UK<\/a> (anglais)<\/li>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/pierrerobinaustralia\/\" target=\"_blank\" rel=\"noopener\">Pierre Robin Australia<\/a> (anglais)<\/li>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/prsawareness\/\" target=\"_blank\" rel=\"noopener\">Pierre Robin Sequence Support, Awareness &amp; Research, South Africa<\/a> (anglais)<\/li>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/213284798881782\/\" target=\"_blank\" rel=\"noopener\">Pierre Robin Sequence and Cleft Palate &#8211; Feeding<\/a> (anglais)<\/li>\n<li>RareConnect, <a href=\"https:\/\/www.rareconnect.org\/en\/login?next=\/en\/community\/pierre-robin-sequence\" target=\"_blank\" rel=\"noopener\">Pierre Robin Sequence<\/a> (anglais)<\/li>\n<li>Groupe Facebook, <a href=\"https:\/\/www.facebook.com\/groups\/814927251890627\/\" target=\"_blank\" rel=\"noopener\">Pierre Robin Sequenz D\/A\/CH<\/a> (allemand)<\/li>\n<\/ul>\n<\/div><\/section>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"open","template":"","meta":{"footnotes":""},"class_list":["post-443","page","type-page","status-publish","hentry"],"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>Contactez-nous sur notre exp\u00e9rience au sujet du Syndrome de Pierre Robin<\/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\/contact\/\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/contact\\\/\",\"url\":\"https:\\\/\\\/pierrerobineurope.com\\\/fr\\\/contact\\\/\",\"name\":\"Contactez-nous sur notre exp\u00e9rience au sujet du Syndrome de Pierre 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