{"id":21161,"date":"2020-08-10T12:12:19","date_gmt":"2020-08-10T10:12:19","guid":{"rendered":"https:\/\/alan.wearequattro.com\/launch-of-the-infoline-maladies-rares-luxembourg\/"},"modified":"2021-01-27T14:10:30","modified_gmt":"2021-01-27T13:10:30","slug":"lancement-du-service-infoline-maladies-rares-luxembourg","status":"publish","type":"post","link":"https:\/\/alan.lu\/fr\/lancement-du-service-infoline-maladies-rares-luxembourg\/","title":{"rendered":"Lancement du Service &#8220;Infoline Maladies Rares Luxembourg&#8221;"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row][vc_column width=&#8221;1\/2&#8243;][vc_column_text]Dans le cadre du premier Plan National Maladies Rares 2018-2022, le minist\u00e8re de la Sant\u00e9 a lanc\u00e9 le Service \u00ab Infoline Maladies Rares Luxembourg \u00bb, une premi\u00e8re ligne de support, d\u2019information et de consultation pour les personnes touch\u00e9es par une maladie rare, leur entourage et les professionnels de la sant\u00e9.<\/p>\n<p>La mise en place de ce service est possible gr\u00e2ce \u00e0 la collaboration et \u00e0 l\u2019expertise d\u2019ALAN \u2013 Maladies Rares Luxembourg qui propose depuis des ann\u00e9es un service de consultation offrant des conseils psychologiques, ainsi qu&#8217;un soutien administratif et social aux personnes concern\u00e9es par une maladie rare.<\/p>\n<p>\u00c0 l\u2019image des autres services de supports offerts aux patients et \u00e0 leur entourage qui sont en place dans d\u2019autres pays en Europe, les missions de l\u2019Infoline Maladies Rares Luxembourg pr\u00e9voient les \u00e9l\u00e9ments suivants :[\/vc_column_text][vc_empty_space height=&#8221;15px&#8221;]<div class=\"edgtf-unordered-list  edgtf-square\" >\n<ul>\n<li><strong>faciliter l&#8217;acc\u00e8s aux informations<\/strong> sur les maladies rares pour les patients, leur entourage et les professionnels de la sant\u00e9 ;<\/li>\n<li><strong>informer et conseiller<\/strong> de mani\u00e8re concr\u00e8te sur les ressources disponibles et\/ou sur les d\u00e9marches \u00e0 suivre ;<\/li>\n<li><strong>am\u00e9liorer l\u2019orientation<\/strong> des personnes vers des services comp\u00e9tents dans le pays.<\/li>\n<li><strong>offrir<\/strong> un lieu d\u2019\u00e9coute <strong>sp\u00e9cialis\u00e9<\/strong> et d\u00e9di\u00e9 ;<\/li>\n<li><strong>identifier les besoins<\/strong> des personnes vivant avec une maladie rare, pour un \u00e9tat des lieux sur le terrain.<\/li>\n<\/ul>\n<\/div>[\/vc_column][vc_column width=&#8221;1\/2&#8243;][vc_column_text]ALAN a \u00e9t\u00e9 mandat\u00e9 par la Direction de la sant\u00e9 pour accomplir les missions de l\u2019Infoline.<\/p>\n<p>L\u2019organisation de l\u2019Infoline pr\u00e9voit un contact par t\u00e9l\u00e9phone (<a href=\"tel:+35220212022\">+352 2021-2022<\/a>) et par le biais d\u2019une adresse de courriel d\u00e9di\u00e9e (<a href=\"mailto:%69%6E%66%6F%6C%69%6E%65%4D%52%40%61%6C%61%6E%2E%6C%75\">infolineMR{a}alan.lu<\/a>), sur des plages horaires d\u00e9finies (Lundi 13h00-17h00 ; Mardi 12h00-16h00 ; Mercredi 09h00-13h00 ; Jeudi 12h00-16h00 ; Vendredi 09h00-13h00). Une r\u00e9ponse est garantie dans un d\u00e9lai de cinq jours ouvrables.<\/p>\n<p>Le service Infoline ne pr\u00e9voit pas d\u2019accompagnement des personnes et n\u2019offrira aucun service de diagnostic. Il constitue une premi\u00e8re \u00e9tape au Luxembourg dans le cadre de l\u2019orientation des personnes concern\u00e9es et de leur entourage vers une prise en charge ad\u00e9quate, et s\u2019inscrit dans un plus ample contexte de conceptualisation et de mise en place d\u2019une \u00ab Maison Maladies Rares \u00bb, qui fait \u00e9galement partie des objectifs prioritaires du Plan National Maladies Rares.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=&#8221;50px&#8221;][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Dans le cadre du premier Plan National Maladies Rares 2018-2022, le minist\u00e8re de la Sant\u00e9 a lanc\u00e9 le Service \u00ab Infoline Maladies Rares Luxembourg \u00bb, une premi\u00e8re ligne de support, d\u2019information et de consultation pour les personnes touch\u00e9es par une maladie rare, leur entourage et les professionnels de la sant\u00e9.<\/p>\n","protected":false},"author":1,"featured_media":21163,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"inline_featured_image":false,"footnotes":""},"categories":[121],"tags":[],"class_list":["post-21161","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-activites-dalan"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - 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