{"id":3367,"date":"2023-03-22T18:02:56","date_gmt":"2023-03-22T17:02:56","guid":{"rendered":"https:\/\/pierrerobineurope.com\/?p=3367"},"modified":"2023-04-21T18:10:00","modified_gmt":"2023-04-21T16:10:00","slug":"a-propos-de-nous-sans-nous","status":"publish","type":"post","link":"https:\/\/pierrerobineurope.com\/fr\/a-propos-de-nous-sans-nous\/","title":{"rendered":"\u00c0 propos de nous, sans nous"},"content":{"rendered":"<div id=\"attachment_3377\" style=\"width: 1210px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3377\" class=\"wp-image-3377 size-full\" src=\"https:\/\/pierrerobineurope.com\/wp-content\/uploads\/2023\/04\/about-SL-anim-FR.gif\" alt=\"\" width=\"1200\" height=\"456\" \/><p id=\"caption-attachment-3377\" class=\"wp-caption-text\">\u00c0 propos de nous, sans nous.<\/p><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2e4mw4-aff6caf7e7ad8a7a2677dc20673a0ff8\">\n#top .hr.hr-invisible.av-2e4mw4-aff6caf7e7ad8a7a2677dc20673a0ff8{\nheight:50px;\n}\n<\/style>\n<div  class='hr av-2e4mw4-aff6caf7e7ad8a7a2677dc20673a0ff8 hr-invisible  avia-builder-el-0  avia-builder-el-no-sibling '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n<h1 style=\"text-align: center;\">Lettre \u00e0 l&rsquo;AMEQUIS, l&rsquo;organisme d&rsquo;\u00e9valuation d\u00e9sign\u00e9 pour \u00e9valuer le syst\u00e8me ERN de l&rsquo;UE<\/h1>\n<p>De la part de : Philippe Pakter<br \/>\nDate : 22 mars 2023<br \/>\nObjet : ERN-Cranio &#8211; retour d&rsquo;information<\/p>\n<p>Cher organisme d&rsquo;\u00e9valuation de l&rsquo;AMEQUIS,<\/p>\n<p>Vendredi 17 mars dernier, vous-m\u00eame et vos coll\u00e8gues de l&rsquo;AMEQUIS, l&rsquo;organisme d&rsquo;\u00e9valuation d\u00e9sign\u00e9 par la Commission europ\u00e9enne, avez eu la gentillesse de recueillir les commentaires des repr\u00e9sentants des patients d&rsquo;ERN-Cranio.<\/p>\n<p>Au cours de la r\u00e9union, vous avez pos\u00e9 des questions sur l&rsquo;implication des patients dans l&rsquo;\u00e9laboration des lignes directrices de pratique clinique.<\/p>\n<p><strong>ERN-Cranio a r\u00e9cemment produit des lignes directrices de pratique clinique pour la maladie rare qu&rsquo;est la s\u00e9quence de Pierre Robin. Concernant ce projet ERN-Cranio financ\u00e9 par l&rsquo;UE :<\/strong><\/p>\n<ol>\n<li><strong>Le groupe de travail d&rsquo;ERN-Cranio charg\u00e9 de cr\u00e9er les lignes directrices de l&rsquo;UE pour la s\u00e9quence de Pierre Robin ne comprenait aucun patient atteint de cette maladie.<\/strong><\/li>\n<li><strong>Le vote de consensus d&rsquo;ERN-Cranio sur ces lignes directrices de l&rsquo;UE pour la s\u00e9quence de Pierre Robin n&rsquo;incluait aucun patient de la s\u00e9quence de Pierre Robin.<\/strong><\/li>\n<\/ol>\n<p>Z\u00e9ro patient atteint de la s\u00e9quence de Pierre Robin dans le groupe de travail et z\u00e9ro patient atteint de la s\u00e9quence de Pierre Robin dans le vote de consensus pour les lignes directrices de pratique clinique d&rsquo;ERN-Cranio financ\u00e9es par l&rsquo;UE pour la maladie rare qu&rsquo;est la s\u00e9quence de Pierre Robin.<\/p>\n<p>Ce document produit par ERN-Cranio et financ\u00e9 par l&rsquo;UE ne r\u00e9pond pas aux normes minimales du syst\u00e8me ERN de l&rsquo;UE, qui exige l\u00e9galement que ces documents financ\u00e9s par l&rsquo;UE soient \u00ab\u00a0centr\u00e9s sur le patient\u00a0\u00bb. Z\u00e9ro et z\u00e9ro n&rsquo;est pas synonyme de centr\u00e9 sur le patient.<\/p>\n<p>Je vous \u00e9cris au nom de Pierre Robin Europe, en tant que pr\u00e9sident de l&rsquo;organisation. Nous repr\u00e9sentons les patients atteints de la maladie rare qu&rsquo;est la s\u00e9quence de Pierre Robin. Au sein de l&rsquo;ERN-Cranio, nous sommes les seuls repr\u00e9sentants des patients atteints de la s\u00e9quence de Pierre Robin. Nous, Pierre Robin Europe, sommes membres d&rsquo;ERN-Cranio depuis 2018 ; nous avons donc \u00e9t\u00e9 officiellement admis au sein d&rsquo;ERN-Cranio plusieurs ann\u00e9es avant le d\u00e9but de ce projet d&rsquo;\u00e9laboration de lignes directrices sur la s\u00e9quence Pierre Robin. La coordinatrice d&rsquo;ERN-Cranio, la Dre Irene Mathijssen, nous a intentionnellement exclus de ce projet de d\u00e9veloppement de lignes directrices financ\u00e9 par l&rsquo;UE. Cela soul\u00e8ve plusieurs questions, dont les suivantes :<\/p>\n<ul>\n<li><strong>Pourquoi la coordinatrice d&rsquo;ERN-Cranio, la Dre Irene Mathijssen, nous a-t-elle exclus de ce projet de d\u00e9veloppement de lignes directrices alors que nous sommes les seuls repr\u00e9sentants de patients au sein d&rsquo;ERN-Cranio \u00e0 repr\u00e9senter les patients atteints de la s\u00e9quence de Pierre Robin ?<\/strong><\/li>\n<li><strong>Pourquoi le tr\u00e8s respect\u00e9 coordinateur d&rsquo;un autre ERN, qui a re\u00e7u le prix EURORDIS \u00ab\u00a0Black Pearl\u00a0\u00bb pour ses contributions exceptionnelles au mouvement des maladies rares, a-t-il envoy\u00e9 une lettre officielle de r\u00e9clamation au ministre allemand de la Sant\u00e9 concernant ce projet de d\u00e9veloppement de lignes directrices de l&rsquo;ERN-Cranio sur la s\u00e9quence de Pierre Robin ?<\/strong><\/li>\n<li><strong>Comment la Commission europ\u00e9enne, qui a fourni \u00e0 ERN-Cranio 50 000 euros de financement direct pour ce projet de d\u00e9veloppement de lignes directrices sur la s\u00e9quence de Pierre Robin, peut-elle pr\u00e9tendre qu&rsquo;il est \u00ab\u00a0centr\u00e9 sur le patient\u00a0\u00bb, alors que le groupe de travail ne comptait aucun patient atteint de la s\u00e9quence de Pierre Robin, et que le vote de consensus ne comptait aucun patient atteint de la s\u00e9quence de Pierre Robin ?<\/strong><\/li>\n<li><strong>Quel m\u00e9canisme est en place dans le syst\u00e8me ERN de l&rsquo;UE pour assurer la responsabilit\u00e9 lorsqu&rsquo;un projet financ\u00e9 par l&rsquo;UE d\u00e9montre un tel niveau de dysfonctionnement ?<\/strong><\/li>\n<\/ul>\n<p>[&#8230;]<\/p>\n<p>Nous attendons avec impatience de parler avec vous. Nous attendons avec impatience de parler avec vous.<\/p>\n<p>Je vous prie d&rsquo;agr\u00e9er, Madame, Monsieur, l&rsquo;expression de mes salutations distingu\u00e9es,<\/p>\n<p>Philippe Pakter<br \/>\nPr\u00e9sident, Pierre Robin Europe : L&rsquo;association officielle de patients d&rsquo;ERN-Cranio pour la s\u00e9quence Pierre Robin<br \/>\nMembre d&rsquo;EURORDIS, l&rsquo;organisation europ\u00e9enne pour les maladies rares<br \/>\nMembre, VSOP, Vereniging Samenwerkende Ouder-en Pati\u00ebntenorganisaties<br \/>\nDoctorant en droit : \u00ab\u00a0Acc\u00e8s aux soins de sant\u00e9 en Europe : l&rsquo;efficacit\u00e9 de la l\u00e9gislation europ\u00e9enne dans le contexte des patients atteints de maladies rares\u00a0\u00bb<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Z\u00e9ro patient SPR dans le groupe de travail et z\u00e9ro patient SPR dans le vote de consensus pour les lignes directrices SPR d&rsquo;ERN-Cranio&#8230; \u00e0 propos de nous, sans nous.<\/p>\n","protected":false},"author":1,"featured_media":3380,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1377,567],"tags":[],"class_list":["post-3367","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ern-cranio-fr","category-mise-a-jour"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.8 (Yoast SEO v28.8) - 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