{"id":31194,"date":"2026-02-10T11:43:34","date_gmt":"2026-02-10T10:43:34","guid":{"rendered":"https:\/\/alan.lu\/?p=31194"},"modified":"2026-02-10T11:43:34","modified_gmt":"2026-02-10T10:43:34","slug":"rare-disease-day-2026","status":"publish","type":"post","link":"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/","title":{"rendered":"Rare Disease Day 2026"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row][vc_column][vc_column_text css=&#8221;&#8221;]<strong>Dans le cadre de la Journ\u00e9e internationale des Maladies Rares (Rare Disease Day), l\u2019association ALAN \u2013 Maladies Rares Luxembourg organise \u00ab Rare Voices \u00bb, une soir\u00e9e, accompagn\u00e9e d\u2019une campagne en ligne, visant \u00e0 donner voix et sc\u00e8ne aux personnes touch\u00e9es par une maladie rare. En outre, pour sensibiliser davantage le grand public et donner un signal fort de solidarit\u00e9, de multiples b\u00e2timents phares seront illumin\u00e9s dans les couleurs du Rare Disease Day pendant la derni\u00e8re semaine de f\u00e9vrier.<\/strong>[\/vc_column_text][vc_empty_space height=&#8221;50px&#8221;][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=&#8221;&#8221;]Le 28 f\u00e9vrier 2026 aura lieu le 19i\u00e8me Rare Disease Day (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 enfants, adolescents et adultes au Luxembourg. Les maladies rares sont souvent g\u00e9n\u00e9tiques, chroniques, progressives et incurables. Elles entra\u00eenent de nombreux d\u00e9fis complexes pour les personnes et familles concern\u00e9es, notamment une v\u00e9ritable \u00ab odyss\u00e9e diagnostique \u00bb, le sentiment d\u2019isolement, le manque d\u2019options de traitement, le besoin d\u2019adaptation du parcours professionnel ou \u00e9ducatif et le risque de probl\u00e8mes de sant\u00e9 mentale.<\/p>\n<p>Comme chaque ann\u00e9e, <em>ALAN Maladies Rares Luxembourg<\/em>, l\u2019a.s.b.l. et alliance nationale repr\u00e9sentant les personnes concern\u00e9es par une maladie rare au Grand-Duch\u00e9, lance plusieurs actions afin d\u2019am\u00e9liorer la prise de conscience et la compr\u00e9hension de ces maladies.<\/p>\n<p>L\u2019association organise \u00ab <strong>Rare Voices<\/strong> \u00bb, une soir\u00e9e donnant voix et sc\u00e8ne aux personnes touch\u00e9es par une maladie rare. \u00c0 travers l\u2019\u00e9criture cr\u00e9ative,\u00a0Nathalie Scheer, Jean-Francis Covi, Lara Post, Samuel Coljon, Carine Hentz, Hannah Hommel, Corinne Thill et Benny Michaels\u00a0explorent le th\u00e8me de la r\u00e9silience et ouvrent un espace de rencontre et d\u2019empathie.<\/p>\n<p>La soir\u00e9e aura lieu le 27 f\u00e9vrier 2026 en pr\u00e9sence de Madame Martine Deprez, Ministre de la Sant\u00e9 et de la S\u00e9curit\u00e9 Sociale, avec le soutien g\u00e9n\u00e9reux du Rotary Club Schengen-Mondorf-les-Bains et de Schroeder &amp; Associ\u00e9s SA. Les po\u00e8mes, nouvelles, histoires pour\u00a0enfants et sc\u00e8nes th\u00e9\u00e2trales, pr\u00e9sent\u00e9s lors de la soir\u00e9e constitueront ensuite l\u2019\u00e9l\u00e9ment central de la campagne de sensibilisation en ligne.<\/p>\n<p>Un autre \u00e9l\u00e9ment phare du Rare Disease Day est la \u00ab <strong>Global Chain of Lights <\/strong>\u00bb. Dans ce cadre, de nombreux b\u00e2timents publics embl\u00e9matiques au Luxembourg seront illumin\u00e9s en bleu, rose, vert et violet pendant la derni\u00e8re semaine de f\u00e9vrier, dont entres autres la Philharmonie, les hauts fourneaux de Belval, et plusieurs mairies, banques et h\u00f4pitaux.<\/p>\n<p>En outre, ALAN et ses partenaires sensibilisent \u00e0 travers la campagne sur les r\u00e9seaux sociaux et <strong>des journ\u00e9es de sensibilisation<\/strong> au Centre Hospitalier du Nord (25 f\u00e9vrier), au Centre Hospitalier Emile Mayrisch (26 f\u00e9vrier), et au Centre Hospitalier de Luxembourg (27 f\u00e9vrier).[\/vc_column_text][vc_empty_space height=&#8221;50px&#8221;][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Dans le cadre de la Journ\u00e9e internationale des Maladies Rares (Rare Disease Day), l\u2019association ALAN \u2013 Maladies Rares Luxembourg organise \u00ab Rare Voices \u00bb, une soir\u00e9e, accompagn\u00e9e d\u2019une campagne en ligne, visant \u00e0 donner voix et sc\u00e8ne aux personnes touch\u00e9es par une maladie rare. En outre, pour sensibiliser davantage le grand public et donner un signal fort de solidarit\u00e9, de multiples b\u00e2timents phares seront illumin\u00e9s dans les couleurs du Rare Disease Day pendant la derni\u00e8re semaine de f\u00e9vrier.<\/p>\n","protected":false},"author":2,"featured_media":31161,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"inline_featured_image":false,"footnotes":""},"categories":[121,123],"tags":[],"class_list":["post-31194","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-activites-dalan","category-journee-des-maladies-rares"],"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 2026 - ALAN<\/title>\n<meta name=\"description\" content=\"Dans le cadre de la Journ\u00e9e internationale des Maladies Rares (Rare Disease Day), l\u2019association ALAN \u2013 Maladies Rares Luxembourg organise \u00ab Rare Voices \u00bb, une soir\u00e9e, accompagn\u00e9e d\u2019une campagne en ligne, visant \u00e0 donner voix et sc\u00e8ne aux personnes touch\u00e9es par une maladie rare. En outre, pour sensibiliser davantage le grand public et donner un signal fort de solidarit\u00e9, de multiples b\u00e2timents phares seront illumin\u00e9s dans les couleurs du Rare Disease Day pendant la derni\u00e8re semaine de f\u00e9vrier.\" \/>\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\/rare-disease-day-2026\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Disease Day 2026 - ALAN\" \/>\n<meta property=\"og:description\" content=\"Dans le cadre de la Journ\u00e9e internationale des Maladies Rares (Rare Disease Day), l\u2019association ALAN \u2013 Maladies Rares Luxembourg organise \u00ab Rare Voices \u00bb, une soir\u00e9e, accompagn\u00e9e d\u2019une campagne en ligne, visant \u00e0 donner voix et sc\u00e8ne aux personnes touch\u00e9es par une maladie rare. En outre, pour sensibiliser davantage le grand public et donner un signal fort de solidarit\u00e9, de multiples b\u00e2timents phares seront illumin\u00e9s dans les couleurs du Rare Disease Day pendant la derni\u00e8re semaine de f\u00e9vrier.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/\" \/>\n<meta property=\"og:site_name\" content=\"ALAN\" \/>\n<meta property=\"article:published_time\" content=\"2026-02-10T10:43:34+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/alan.lu\/wp-content\/uploads\/2026\/02\/RDD-2026-banner-1300x930-1.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1300\" \/>\n\t<meta property=\"og:image:height\" content=\"930\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Sarah Sepoy\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Sarah Sepoy\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/\"},\"author\":{\"name\":\"Sarah Sepoy\",\"@id\":\"https:\/\/alan.lu\/fr\/#\/schema\/person\/7b3afc06fbed136ad30d666f845ddccc\"},\"headline\":\"Rare Disease Day 2026\",\"datePublished\":\"2026-02-10T10:43:34+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/\"},\"wordCount\":524,\"image\":{\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/alan.lu\/wp-content\/uploads\/2026\/02\/RDD-2026-banner-1300x930-1.png\",\"articleSection\":[\"Activit\u00e9s d\u2019ALAN\",\"Journ\u00e9e des Maladies Rares\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/\",\"url\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/\",\"name\":\"Rare Disease Day 2026 - ALAN\",\"isPartOf\":{\"@id\":\"https:\/\/alan.lu\/fr\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/alan.lu\/fr\/rare-disease-day-2026\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/alan.lu\/wp-content\/uploads\/2026\/02\/RDD-2026-banner-1300x930-1.png\",\"datePublished\":\"2026-02-10T10:43:34+00:00\",\"author\":{\"@id\":\"https:\/\/alan.lu\/fr\/#\/schema\/person\/7b3afc06fbed136ad30d666f845ddccc\"},\"description\":\"Dans le cadre de la Journ\u00e9e internationale des Maladies Rares (Rare Disease Day), l\u2019association ALAN \u2013 Maladies Rares Luxembourg organise \u00ab Rare Voices \u00bb, une soir\u00e9e, accompagn\u00e9e d\u2019une campagne en ligne, visant \u00e0 donner voix et sc\u00e8ne aux personnes touch\u00e9es par une maladie rare. 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