{"id":28992,"date":"2024-01-31T12:56:16","date_gmt":"2024-01-31T11:56:16","guid":{"rendered":"https:\/\/alan.lu\/?page_id=28992"},"modified":"2024-03-01T12:50:25","modified_gmt":"2024-03-01T11:50:25","slug":"rare-disease-day-2024","status":"publish","type":"page","link":"https:\/\/alan.lu\/de\/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]Am 29. Februar 2024 findet der 17. Rare Disease Day (internationaler Tag der seltenen Erkrankungen) statt. Hauptziel dieser internationalen Kampagne ist es, die \u00d6ffentlichkeit und die politischen Entscheidungstr\u00e4ger f\u00fcr seltene Erkrankungen und deren Auswirkungen auf das Leben der Betroffenen, darunter etwa 30.000 Menschen in Luxemburg, zu sensibilisieren. Unter der Schirmherrschaft von EURORDIS, der europ\u00e4ischen Allianz von \u00fcber 1000 Patientenorganisationen f\u00fcr seltene Erkrankungen, engagieren sich jedes Jahr am letzten Tag im Februar Tausende von Menschen, um Sensibilisierungskampagnen und Veranstaltungen in mehr als 100 verschiedenen L\u00e4ndern zu starten.<\/p>\n<p>In Luxemburg wird die Sensibilisierungskampagne angef\u00fchrt von der gemeinn\u00fctzigen Vereinigung und nationalen Allianz f\u00fcr Menschen, die in Luxemburg von einer seltenen Erkrankung betroffen sind, <em>ALAN &#8211; Maladies Rares Luxembourg<\/em> und seinen \u00f6ffentlichen und privaten Partner.<\/p>\n<p>Ein gro\u00dfes Dankesch\u00f6n an alle unsere Partner, die unsere Sensibilisierungsaktionen im Rahmen des Rare Disease Day unterst\u00fctzt haben![\/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;\">Die \u201eGlobal Chain of Lights\u201c-Aktion<\/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]Ein Highlight des Rare Disease Day ist wie in den vergangenen Jahren die \u201eGlobal Chain of Lights\u201c \u2013 die Beleuchtung \u00f6ffentlicher, symbolischer Geb\u00e4ude und Denkm\u00e4ler auf der ganzen Welt in den Farben des Rare Disease Day. Das Ziel dieser Aktion besteht darin, ein Zeichen der Gemeinschaft &amp; Solidarit\u00e4t zu setzen und gleichzeitig \u00fcber seltene Erkrankungen aufzukl\u00e4ren.<\/p>\n<p>F\u00fcr die Aktion \u201eGlobal Chain of Lights\u201c werden in der letzten Februarwoche 2024 mehrere symbolische Geb\u00e4ude in Luxemburg blau, rosa, gr\u00fcn und lila beleuchtet, darunter:[\/vc_column_text][vc_empty_space]<div class=\"edgtf-unordered-list  edgtf-square\" >\n<ul>\n<li>Die Philharmonie<\/li>\n<li>Der Hauptsitz der Spuerkeess<\/li>\n<li>Die Hoch\u00f6fen von Belval<\/li>\n<li>Das Centre Hospitaler de Luxembourg<\/li>\n<li>Das Centre Hospitalier Emile Mayrisch<\/li>\n<li>Das Centre Hospitalier du Nord<\/li>\n<li>Das Rehazenter<\/li>\n<li>Luxemburg-Stadt: der Wasserturm am Ban de Gasperich<\/li>\n<li>Contern: das Gemeindehaus<\/li>\n<li>Esch-sur-Alzette: das Gemeindehaus<\/li>\n<li>Flaxweiler: das Gemeindehaus<\/li>\n<li>Grevenmacher: das Gemeindehaus<\/li>\n<li>Helperknapp: das Gemeindehaus<\/li>\n<li>Hesperange: das Centre multifonctionnel CELO<\/li>\n<li>Larochette: die Kirche<\/li>\n<li>Mamer: das Mamer Schlass und die Maison Citoyenne<\/li>\n<li>Mersch: der Drachen &amp; die Schlossmauer<\/li>\n<li>Nommern: das Gemeindehaus<\/li>\n<li>Kehlen: das Gemeindehaus<\/li>\n<li>Remich: das Gemeindehaus<\/li>\n<li>Redange: die Kirche<\/li>\n<li>Schieren: das Gemeindehaus<\/li>\n<\/ul>\n<\/div>[vc_single_image image=&#8221;23748&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221;][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;\">Die Sensibilisierungskampagne und Veranstaltungen<\/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]Neben der Beleuchtung der Geb\u00e4ude, f\u00fchren die Vereinigung ALAN und ihre Partner w\u00e4hrend des ganzen Monats Februar eine intensive Kampagne in den sozialen Medien und organisieren Sensibilisierungsveranstaltungen.<\/p>\n<p>In Zusammenarbeit mit dem Luxembourg Centre for Systems Biomedicine (LCSB) organisiert ALAN am 26. Februar 2024 eine Konferenz zum Thema Diagnostik von seltenen Erkrankungen. Weitere Informationen hierzu <a href=\"https:\/\/alan.lu\/wp-content\/uploads\/2024\/01\/LCSB-miniconf-flyer.pdf\">finden Sie hier.<\/a><\/p>\n<p>Mit seinen Partnern vom Centre Hospitalier du Nord (CHdN), vom Centre Hospitalier de Luxembourg (CHL) und dem Centre Hospitalier Emile Mayrisch (CHEM) organisiert ALAN am 29. Februar 2024 einen Sensibilisierungstag in diesen Krankenh\u00e4usern.<\/p>\n<p>ALAN organisiert Lesungen des Kinderbuchs \u201eToni Konfettoni\u201c in Schulen, Maison Relais und \u00f6ffentlichen Bibliotheken, unter anderem am 16. M\u00e4rz 2024 um 10:30 Uhr im Cercle Cit\u00e9 in Luxemburg-Stadt. Das von \u00c9ditions Guy Binsfeld in Zusammenarbeit mit ALAN herausgegebene Buch, soll Kinder f\u00fcr seltene oder chronische Krankheiten sensibilisieren und befasst sich allgemein mit Themen wie Empathie, Akzeptanz und Inklusion.[\/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;\">Machen Sie beim Rare Disease Day mit!<\/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][vc_column_text]Besuchen Sie <a href=\"https:\/\/www.rarediseaseday.org\/downloads\/lightupforrare\/\">rarediseaseday.org<\/a>\u00a0und folgen Sie unseren <a href=\"https:\/\/www.facebook.com\/alanmaladiesraresluxembourg\">Facebook<\/a>&#8211; ,\u00a0<a href=\"https:\/\/www.instagram.com\/alanmaladiesraresluxembourg\/\">Instagram<\/a> und <a href=\"https:\/\/www.tiktok.com\/@alan_maladies_rares_lux\">TikTok<\/a>-Seiten, um den Rare Disease Day zu unterst\u00fctzen und an der Diskussion teilzunehmen.[\/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;\">Was ist eine seltene Erkrankung?<\/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\/de\/was-ist-eine-seltene-erkrankung\/\" 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\">mehr erfahren<\/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;\">Der Nationale Plan f\u00fcr Seltene Krankheiten<\/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\">mehr erfahren<\/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]Am 29. Februar 2024 findet der 17. Rare Disease Day (internationaler Tag der seltenen Erkrankungen) statt. Hauptziel dieser internationalen Kampagne ist es,&#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-28992","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. These actions are accompanied by an intensive and interactive social media campaign.\" \/>\n<meta name=\"robots\" content=\"noindex, follow\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Disease Day 2024, - ALAN\" \/>\n<meta property=\"og: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. These actions are accompanied by an intensive and interactive social media campaign.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/alan.lu\/de\/rare-disease-day-2024\/\" \/>\n<meta property=\"og:site_name\" content=\"ALAN\" \/>\n<meta property=\"article:modified_time\" content=\"2024-03-01T11:50:25+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Gesch\u00e4tzte Lesezeit\" \/>\n\t<meta name=\"twitter:data1\" content=\"3\u00a0Minuten\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/alan.lu\/de\/rare-disease-day-2024\/\",\"url\":\"https:\/\/alan.lu\/de\/rare-disease-day-2024\/\",\"name\":\"Rare Disease Day 2024, - ALAN\",\"isPartOf\":{\"@id\":\"https:\/\/alan.lu\/de\/#website\"},\"datePublished\":\"2024-01-31T11:56:16+00:00\",\"dateModified\":\"2024-03-01T11:50:25+00:00\",\"description\":\"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. These actions are accompanied by an intensive and interactive social media campaign.\",\"breadcrumb\":{\"@id\":\"https:\/\/alan.lu\/de\/rare-disease-day-2024\/#breadcrumb\"},\"inLanguage\":\"de\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/alan.lu\/de\/rare-disease-day-2024\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/alan.lu\/de\/rare-disease-day-2024\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\/\/alan.lu\/de\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Rare Disease Day 2024\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/alan.lu\/de\/#website\",\"url\":\"https:\/\/alan.lu\/de\/\",\"name\":\"ALAN\",\"description\":\"Rare Diseases Luxembourg\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/alan.lu\/de\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"de\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Rare Disease Day 2024, - ALAN","description":"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. These actions are accompanied by an intensive and interactive social media campaign.","robots":{"index":"noindex","follow":"follow"},"og_locale":"de_DE","og_type":"article","og_title":"Rare Disease Day 2024, - ALAN","og_description":"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. These actions are accompanied by an intensive and interactive social media campaign.","og_url":"https:\/\/alan.lu\/de\/rare-disease-day-2024\/","og_site_name":"ALAN","article_modified_time":"2024-03-01T11:50:25+00:00","twitter_card":"summary_large_image","twitter_misc":{"Gesch\u00e4tzte Lesezeit":"3\u00a0Minuten"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/alan.lu\/de\/rare-disease-day-2024\/","url":"https:\/\/alan.lu\/de\/rare-disease-day-2024\/","name":"Rare Disease Day 2024, - ALAN","isPartOf":{"@id":"https:\/\/alan.lu\/de\/#website"},"datePublished":"2024-01-31T11:56:16+00:00","dateModified":"2024-03-01T11:50:25+00:00","description":"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. These actions are accompanied by an intensive and interactive social media campaign.","breadcrumb":{"@id":"https:\/\/alan.lu\/de\/rare-disease-day-2024\/#breadcrumb"},"inLanguage":"de","potentialAction":[{"@type":"ReadAction","target":["https:\/\/alan.lu\/de\/rare-disease-day-2024\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/alan.lu\/de\/rare-disease-day-2024\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/alan.lu\/de\/"},{"@type":"ListItem","position":2,"name":"Rare Disease Day 2024"}]},{"@type":"WebSite","@id":"https:\/\/alan.lu\/de\/#website","url":"https:\/\/alan.lu\/de\/","name":"ALAN","description":"Rare Diseases Luxembourg","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/alan.lu\/de\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"de"}]}},"campaignId":"","_links":{"self":[{"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/pages\/28992","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/comments?post=28992"}],"version-history":[{"count":12,"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/pages\/28992\/revisions"}],"predecessor-version":[{"id":29131,"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/pages\/28992\/revisions\/29131"}],"wp:attachment":[{"href":"https:\/\/alan.lu\/de\/wp-json\/wp\/v2\/media?parent=28992"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}