{"id":21119,"date":"2020-08-16T17:12:13","date_gmt":"2020-08-16T15:12:13","guid":{"rendered":"https:\/\/alan.wearequattro.com\/government-response-to-our-open-letter\/"},"modified":"2021-03-15T11:14:21","modified_gmt":"2021-03-15T10:14:21","slug":"reponse-du-gouvernement-a-notre-lettre-ouverte","status":"publish","type":"post","link":"https:\/\/alan.lu\/fr\/reponse-du-gouvernement-a-notre-lettre-ouverte\/","title":{"rendered":"R\u00e9ponse du gouvernement \u00e0 notre lettre ouverte"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row][vc_column width=&#8221;1\/2&#8243;][vc_column_text]Fin mars, ALAN et plusieurs autres associations ont envoy\u00e9 une lettre ouverte au gouvernement pour attirer leur attention sur les probl\u00e8mes sp\u00e9cifiques caus\u00e9s par la pand\u00e9mie COVID-19 pour les familles dont un membre vit avec une maladie rare ou chronique.<\/p>\n<p>Vous trouverez ci-dessous la r\u00e9ponse des ministres, ainsi que notre prise de position \u00e0 leur r\u00e9ponse.<\/p>\n<p>Nous sommes heureux que les ministres aient r\u00e9agi de mani\u00e8re aussi positive et aient pris des mesures concr\u00e8tes pour r\u00e9pondre \u00e0 la plupart des points \u00e9voqu\u00e9s. Ainsi, nous avons par exemple pu[\/vc_column_text][vc_empty_space height=&#8221;15px&#8221;]<div class=\"edgtf-unordered-list  edgtf-square\" >\n<ul>\n<li>distribuer des masques aux autres associations signataires et aux patients particuli\u00e8rement vuln\u00e9rables qui sont actuellement suivis par notre \u00e9quipe de consultation,<\/li>\n<li>envoyer une liste des m\u00e9dicaments vitaux au Minist\u00e8re de la Sant\u00e9 afin qu&#8217;il puisse assurer un acc\u00e8s continu \u00e0 ces m\u00e9dicaments,<\/li>\n<li>d\u00e9signer un repr\u00e9sentant des patients qui peut conseiller le Minist\u00e8re de la Sant\u00e9 sur les informations publi\u00e9es concernant les m\u00e9dicaments.<\/li>\n<\/ul>\n<\/div>[vc_empty_space height=&#8221;30px&#8221;][\/vc_column][vc_column width=&#8221;1\/2&#8243;][vc_column_text]Cependant, la r\u00e9ponse au point concernant le cong\u00e9 pour raisons familiales pour les deux parents n&#8217;\u00e9tait pas satisfaisante \u00e0 notre avis, d\u2019o\u00f9 notre seconde lettre (prise de position).<\/p>\n<p>Un grand merci \u00e0 nos partenaires :[\/vc_column_text][vc_empty_space height=&#8221;15px&#8221;]<div class=\"edgtf-unordered-list  edgtf-square\" >\n<ul>\n<li>Fondatioun Kriibskrank Kanner (aide aux enfants atteints d&#8217;un cancer)<\/li>\n<li>H\u00e4erzkrank Kanner L\u00ebtzebuerg ALAEC<\/li>\n<li>Info-Handicap Asbl<\/li>\n<li>ALLM<\/li>\n<li>W\u00e4ertvollt-Liewen asbl<\/li>\n<li>Een H\u00e4erz fir kriibskrank Kanner asbl<\/li>\n<li>Association Europ\u00e9enne contre les Leucodystrophies<\/li>\n<li>Syndrome de Marfan den-i asbl<\/li>\n<\/ul>\n<\/div>[vc_empty_space height=&#8221;30px&#8221;][\/vc_column][\/vc_row][vc_row content_aligment=&#8221;center&#8221;][vc_column]<a itemprop=\"url\" href=\"https:\/\/alan.lu\/wp-content\/uploads\/2021\/03\/Reponse-commune-14-avril-2020.pdf\" target=\"_blank\" style=\"color: #ffffff;background-color: #ee3f75;border-color: #ee3f75;font-weight: 600\" class=\"edgtf-btn edgtf-btn-medium edgtf-btn-solid edgtf-btn-custom-hover-bg edgtf-btn-custom-border-hover edgtf-btn-custom-hover-color\" data-hover-bg-color=\"#ffffff\" data-hover-color=\"#ee3f75\" data-hover-border-color=\"#ee3f75\" >\n\t<span class=\"edgtf-btn-text\">Lire la r\u00e9ponse<\/span>\n    <\/a>[vc_empty_space height=&#8221;40px&#8221;]<a itemprop=\"url\" href=\"https:\/\/alan.lu\/wp-content\/uploads\/2021\/03\/Prise-de-position-par-rapport-aux-reponses-du-gouvernement.pdf\" target=\"_blank\" style=\"color: #ffffff;background-color: #ee3f75;border-color: #ee3f75;font-weight: 600\" class=\"edgtf-btn edgtf-btn-medium edgtf-btn-solid edgtf-btn-custom-hover-bg edgtf-btn-custom-border-hover edgtf-btn-custom-hover-color\" data-hover-bg-color=\"#ffffff\" data-hover-color=\"#ee3f75\" data-hover-border-color=\"#ee3f75\" >\n\t<span class=\"edgtf-btn-text\">Lire la prise de position<\/span>\n    <\/a>[vc_empty_space height=&#8221;40px&#8221;][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Fin mars, ALAN et plusieurs autres associations ont envoy\u00e9 une lettre ouverte au gouvernement pour attirer leur attention sur les probl\u00e8mes sp\u00e9cifiques caus\u00e9s par la pand\u00e9mie COVID-19 pour les familles, o\u00f9 une personne vit avec une maladie rare ou chronique.<br \/>\nVous trouverez ci-dessous la r\u00e9ponse des ministres, ainsi que notre prise de position \u00e0 leur r\u00e9ponse.<\/p>\n","protected":false},"author":1,"featured_media":21120,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"inline_featured_image":false,"footnotes":""},"categories":[122],"tags":[],"class_list":["post-21119","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-covid-19-fr"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>R\u00e9ponse du gouvernement \u00e0 notre lettre ouverte - ALAN<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alan.lu\/fr\/reponse-du-gouvernement-a-notre-lettre-ouverte\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"R\u00e9ponse du gouvernement \u00e0 notre lettre ouverte - ALAN\" \/>\n<meta property=\"og:description\" content=\"Fin mars, ALAN et plusieurs autres associations ont envoy\u00e9 une lettre ouverte au gouvernement pour attirer leur attention sur les probl\u00e8mes sp\u00e9cifiques caus\u00e9s par la pand\u00e9mie COVID-19 pour les familles, o\u00f9 une personne vit avec une maladie rare ou chronique. 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