{"id":28993,"date":"2024-01-31T12:55:59","date_gmt":"2024-01-31T11:55:59","guid":{"rendered":"https:\/\/alan.lu\/?page_id=28993"},"modified":"2024-03-01T12:47:44","modified_gmt":"2024-03-01T11:47:44","slug":"rare-disease-day-2024","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/rare-disease-day-2024\/","title":{"rendered":"Rare Disease Day 2024"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row content_width=&#8221;grid&#8221;][vc_column][vc_column_text]<\/p>\n<h2 style=\"text-align: center;\">Rare Disease Day 2024<\/h2>\n<p>[\/vc_column_text][vc_empty_space height=&#8221;14px&#8221;]<div class=\"edgtf-separator-holder clearfix  edgtf-separator-center\">\n\t<div class=\"edgtf-separator\" style=\"border-color: #00bcdf;width: 50px;border-bottom-width: 3px;margin-top: 25px;margin-bottom: 25px\"><\/div>\n<\/div>\n[vc_empty_space height=&#8221;14px&#8221;][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Le 29 f\u00e9vrier 2024 nous c\u00e9l\u00e9brons le 17e <a href=\"https:\/\/www.rarediseaseday.org\/\">Rare Disease Day<\/a> (Journ\u00e9e Internationale des Maladies Rares), une journ\u00e9e d\u00e9di\u00e9e \u00e0 sensibiliser le grand public sur les maladies rares et leur impact sur la vie des personnes concern\u00e9es, dont approximativement 30.000 personnes au Luxembourg. Sous l\u2019\u00e9gide d\u2019EURORDIS, l\u2019alliance internationale regroupant plus de 1000 associations de patients atteints d\u2019une maladie rare, des milliers de personnes s\u2019engagent chaque ann\u00e9e le dernier jour de f\u00e9vrier pour lancer des actions et des \u00e9v\u00e9nements de sensibilisation dans plus de 100 pays diff\u00e9rents.<\/p>\n<p>Au Luxembourg la campagne de sensibilisation est men\u00e9e par <em>ALAN &#8211; Maladies Rares Luxembourg<\/em>, l\u2019a.s.b.l. et alliance nationale repr\u00e9sentant les personnes concern\u00e9es par une maladie rare au Luxembourg et par ses partenaires publics et priv\u00e9s.<\/p>\n<p>Un grand merci \u00e0 tous nos partenaires qui ont soutenu nos actions de sensibilisation dans le cadre du Rare Disease Day ![\/vc_column_text][vc_empty_space height=&#8221;64px&#8221;][\/vc_column][\/vc_row][vc_row content_width=&#8221;grid&#8221;][vc_column][vc_column_text]<\/p>\n<h2 style=\"text-align: center;\">L\u2019action \u00ab Global Chain of Lights \u00bb<\/h2>\n<p>[\/vc_column_text][vc_empty_space height=&#8221;14px&#8221;]<div class=\"edgtf-separator-holder clearfix  edgtf-separator-center\">\n\t<div class=\"edgtf-separator\" style=\"border-color: #00bcdf;width: 50px;border-bottom-width: 3px;margin-top: 25px;margin-bottom: 25px\"><\/div>\n<\/div>\n[vc_empty_space height=&#8221;14px&#8221;][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Comme les ann\u00e9es pr\u00e9c\u00e9dentes, un \u00e9l\u00e9ment phare du Rare Disease Day est la \u00ab Global Chain of Lights \u00bb &#8211; l\u2019illumination de b\u00e2timents publics, embl\u00e9matiques et des monuments dans les couleurs du Rare Disease Day \u00e0 travers le monde entier. Le but de cette illumination est de briser l&#8217;isolement des personnes concern\u00e9es par une maladie rare, d\u2019exprimer notre solidarit\u00e9 et de sensibiliser.<\/p>\n<p>Pour l\u2019action \u00ab Global Chain of Lights \u00bb au Luxembourg de nombreux b\u00e2timents prestigieux sont illumin\u00e9s en bleu, rose, vert et violet pendant la derni\u00e8re semaine de f\u00e9vrier 2024, dont entre autres :[\/vc_column_text][vc_empty_space]<div class=\"edgtf-unordered-list  edgtf-square\" >\n<ul>\n<li>La Philharmonie Luxembourg<\/li>\n<li>Le si\u00e8ge de la Spuerkeess<\/li>\n<li>Les hauts fourneaux de Belval<\/li>\n<li>le Centre hospitalier de Luxembourg<\/li>\n<li>Le Centre Hospitalier Emile Mayrisch<\/li>\n<li>Le Centre Hospitalier du Nord<\/li>\n<li>Le Rehazenter<\/li>\n<li>Luxembourg-ville : le Ch\u00e2teau d&#8217;eau au ban de Gasperich<\/li>\n<li>Contern: le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Esch-sur-Alzette: le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Flaxweiler: le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Grevenmacher : le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Helperknapp: le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Hesperange : le centre multifonctionnel CELO<\/li>\n<li>Larochette : l&#8217;\u00e9glise<\/li>\n<li>Mamer : le Mamer Schlass et la Maison Citoyenne de Mamer<\/li>\n<li>Mersch : le dragon &amp; le mur du ch\u00e2teau<\/li>\n<li>Nommern : le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Kehlen: le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Remich: le b\u00e2timent de l\u2019administration communale<\/li>\n<li>Redange : l&#8217;\u00e9glise<\/li>\n<li>Schieren: le b\u00e2timent de l\u2019administration communale<\/li>\n<\/ul>\n<\/div>[vc_empty_space height=&#8221;14px&#8221;][vc_single_image image=&#8221;23747&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221;][vc_empty_space height=&#8221;64px&#8221;][vc_column_text]<\/p>\n<p>[\/vc_column_text][\/vc_column][\/vc_row][vc_row content_width=&#8221;grid&#8221;][vc_column][vc_column_text]<\/p>\n<h2 style=\"text-align: center;\">Les \u00e9v\u00e9nements<\/h2>\n<p>[\/vc_column_text][vc_empty_space height=&#8221;14px&#8221;]<div class=\"edgtf-separator-holder clearfix  edgtf-separator-center\">\n\t<div class=\"edgtf-separator\" style=\"border-color: #00bcdf;width: 50px;border-bottom-width: 3px;margin-top: 25px;margin-bottom: 25px\"><\/div>\n<\/div>\n[vc_empty_space height=&#8221;14px&#8221;][vc_column_text]L\u2019illumination des b\u00e2timents sera accompagn\u00e9e par des \u00e9v\u00e9nements de sensibilisation et une campagne intensive sur les r\u00e9seaux sociaux, men\u00e9e par ALAN et ses partenaires pendant tout le mois de f\u00e9vrier\u00a0:<\/p>\n<p>En collaboration avec le Luxembourg Centre for Systems Biomedicine (LCSB) ALAN organise une conf\u00e9rence grand public sur le diagnostic des maladies rares le 26 f\u00e9vrier 2024. Pour plus d\u2019informations, <a href=\"https:\/\/alan.lu\/wp-content\/uploads\/2024\/01\/LCSB-miniconf-flyer.pdf\">cliquez ici<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Avec ses partenaires du Centre Hospitalier du Nord (CHdN), du Centre Hospitalier Emile Mayrisch (CHEM) et du Centre Hospitalier de Luxembourg (CHL) ALAN organise une journ\u00e9e de sensibilisation dans ces h\u00f4pitaux, le 29 f\u00e9vrier 2024.<\/p>\n<p>&nbsp;<\/p>\n<p>ALAN organise des lectures du livre pour enfants \u00ab\u00a0Toni Konfettoni\u00a0\u00bb dans des \u00e9coles, des maisons relais et des biblioth\u00e8ques publiques, dont notamment, le 16 mars 2024 \u00e0 10h30 au Cercle Cit\u00e9 \u00e0 Luxembourg-ville. Publi\u00e9 aux \u00c9ditions Guy Binsfeld, en collaboration avec ALAN, le livre vise \u00e0 sensibiliser les enfants aux maladies rares ou chroniques, et, plus g\u00e9n\u00e9ralement, aborde des sujets comme l\u2019empathie, l\u2019acceptation et l\u2019inclusion.<\/p>\n<p>[\/vc_column_text][vc_empty_space height=&#8221;64px&#8221;][\/vc_column][\/vc_row][vc_row content_width=&#8221;grid&#8221;][vc_column][vc_column_text]<\/p>\n<h2 style=\"text-align: center;\">Participez au Rare Disease Day!<\/h2>\n<p>[\/vc_column_text][vc_empty_space height=&#8221;14px&#8221;]<div class=\"edgtf-separator-holder clearfix  edgtf-separator-center\">\n\t<div class=\"edgtf-separator\" style=\"border-color: #00bcdf;width: 50px;border-bottom-width: 3px;margin-top: 25px;margin-bottom: 25px\"><\/div>\n<\/div>\n[vc_empty_space height=&#8221;14px&#8221;][vc_column_text]Visitez <a href=\"https:\/\/www.rarediseaseday.org\/downloads\/lightupforrare\/\">rarediseaseday.org<\/a> et suivez nos pages <a href=\"https:\/\/www.facebook.com\/alanmaladiesraresluxembourg\">Facebook,<\/a>\u00a0<a href=\"https:\/\/www.instagram.com\/alanmaladiesraresluxembourg\/\">Instagram<\/a> et <a href=\"https:\/\/www.tiktok.com\/@alan_maladies_rares_lux\">TikTok<\/a> pour soutenir le Rare Disease Day et rejoindre la discussion ![\/vc_column_text][vc_empty_space height=&#8221;64px&#8221;][\/vc_column][\/vc_row][vc_row content_width=&#8221;grid&#8221; css=&#8221;.vc_custom_1603354399161{padding-top: 36px !important;padding-bottom: 41px !important;}&#8221; el_id=&#8221;wrapper-contact-next-btn&#8221;][vc_column width=&#8221;1\/2&#8243;]\t<div class=\"edgtf-call-to-action normal\" style=\"background-color: #00b4dd;\">\n\n\t\t\t\t\t<div class=\"edgtf-call-to-action-row-75-25 clearfix\" style=\"padding: 55px 15px;\">\n\t\t\t\t\t\t<div class=\"edgtf-text-wrapper edgtf-call-to-action-column1 edgtf-call-to-action-cell left\">\n\t\t\t\t\t<div class=\"edgtf-call-to-action-text\" style=\"text-align: left\"><span style=\"color: #ffffff;\">Qu\u2019est ce qu\u2019une maladie rare ?<\/span>\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\n\t\t\t\t\t\t\t\t\t<div class=\"edgtf-button-wrapper edgtf-call-to-action-column2 edgtf-call-to-action-cell\" style =\"text-align: right ;\">\n\t\t\t\t\t\t<a itemprop=\"url\" href=\"https:\/\/alan.lu\/fr\/qu-est-ce-qu-une-maladie-rare\/\" target=\"_self\" style=\"color: #00b4dd;background-color: #ffffff;border-color: #ffffff\" class=\"edgtf-btn edgtf-btn-large edgtf-btn-solid edgtf-btn-custom-hover-bg edgtf-btn-custom-border-hover edgtf-btn-custom-hover-color\" data-hover-bg-color=\"#00b4dd\" data-hover-color=\"#ffffff\" data-hover-border-color=\"#ffffff\" >\t<span class=\"edgtf-btn-text\">D\u00e9couvrir<\/span>    <\/a>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n[\/vc_column][vc_column width=&#8221;1\/2&#8243;]\t<div class=\"edgtf-call-to-action normal\" style=\"background-color: #00b4dd;\">\n\n\t\t\t\t\t<div class=\"edgtf-call-to-action-row-75-25 clearfix\" style=\"padding: 55px 15px;\">\n\t\t\t\t\t\t<div class=\"edgtf-text-wrapper edgtf-call-to-action-column1 edgtf-call-to-action-cell left\">\n\t\t\t\t\t<div class=\"edgtf-call-to-action-text\" style=\"text-align: left\"><span style=\"color: #ffffff;\">Le Plan National Maladies Rares<\/span>\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\n\t\t\t\t\t\t\t\t\t<div class=\"edgtf-button-wrapper edgtf-call-to-action-column2 edgtf-call-to-action-cell\" style =\"text-align: right ;\">\n\t\t\t\t\t\t<a itemprop=\"url\" href=\"https:\/\/sante.public.lu\/fr\/politique-sante\/plans-action\/maladies-rares\/index.html\" target=\"_self\" style=\"color: #00b4dd;background-color: #ffffff;border-color: #ffffff\" class=\"edgtf-btn edgtf-btn-large edgtf-btn-solid edgtf-btn-custom-hover-bg edgtf-btn-custom-border-hover edgtf-btn-custom-hover-color\" data-hover-bg-color=\"#00b4dd\" data-hover-color=\"#ffffff\" data-hover-border-color=\"#ffffff\" >\t<span class=\"edgtf-btn-text\">D\u00e9couvrir<\/span>    <\/a>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n[\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row content_width=&#8221;grid&#8221;][vc_column][vc_column_text] Rare Disease Day 2024 [\/vc_column_text][vc_empty_space height=&#8221;14px&#8221;][vc_empty_space height=&#8221;14px&#8221;][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Le 29 f\u00e9vrier 2024 nous c\u00e9l\u00e9brons le 17e Rare Disease Day (Journ\u00e9e Internationale des Maladies Rares), une journ\u00e9e d\u00e9di\u00e9e \u00e0 sensibiliser le&#8230;<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"give_campaign_id":0,"inline_featured_image":false,"footnotes":""},"class_list":["post-28993","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rare Disease Day 2024, - ALAN<\/title>\n<meta name=\"description\" content=\"This year for Rare Disease Day ALAN and its partners focus their campaign on two actions: the \u201cGlobal Chain of Lights\u201d and the photo exhibition \u201cRaReflections. 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