{"id":21113,"date":"2020-08-17T10:00:29","date_gmt":"2020-08-17T08:00:29","guid":{"rendered":"https:\/\/alan.wearequattro.com\/annual-report-2019\/"},"modified":"2021-01-27T14:10:29","modified_gmt":"2021-01-27T13:10:29","slug":"rapport-d-activites-2019","status":"publish","type":"post","link":"https:\/\/alan.lu\/fr\/rapport-d-activites-2019\/","title":{"rendered":"Rapport d\u2019Activit\u00e9s 2019"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row][vc_column width=&#8221;1\/2&#8243;][vc_column_text]En 2019, ALAN a soutenu pr\u00e8s de 400 patients et familles touch\u00e9s par une maladie rare, repr\u00e9sentant plus de 200 maladies diff\u00e9rentes. Le nombre de consultations psycho-sociales effectu\u00e9es par l\u2019\u00e9quipe pluridisciplinaire d\u2019ALAN en 2019 a augment\u00e9 de 40% par rapport \u00e0 l\u2019ann\u00e9e pr\u00e9c\u00e9dente. Outre ses services de consultations et d\u2019activit\u00e9s sportives adapt\u00e9es, l\u2019association s\u2019est beaucoup investie dans la sensibilisation, dans le renforcement des partenariats internationaux et dans le Plan National Maladies Rares, notamment \u00e0 travers le lancement de l\u2019Infoline Maladies Rares Luxembourg.[\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/2&#8243;][vc_column_text]Les maladies qui touchent moins de 5 personnes sur 10.000 sont appel\u00e9es maladies rares. Au niveau europ\u00e9en, le nombre total de personnes concern\u00e9es est estim\u00e9 \u00e0 30 millions, dont approximativement 30.000 personnes au Luxembourg. Les maladies rares sont g\u00e9n\u00e9ralement chroniques et \u00e9volutives. En plus, le pronostic vital est fr\u00e9quemment engag\u00e9, puisqu\u2019il existe tr\u00e8s peu de m\u00e9dicaments et traitements.\u00a0 Au manque de th\u00e9rapies s\u2019ajoute souvent un manque d\u2019informations, d\u2019expertise et de coordination.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=&#8221;30px&#8221;][\/vc_column][\/vc_row][vc_row][vc_column width=&#8221;1\/2&#8243;][vc_column_text]<strong>Le service de consultation<\/strong><\/p>\n<p>Pour soutenir les personnes concern\u00e9es et leurs familles face \u00e0 ces d\u00e9fis, ALAN propose un service de consultation offrant des conseils psychologiques, ainsi qu\u2019un soutien administratif et social pour informer, guider et assister les concern\u00e9s dans plusieurs domaines, dont, notamment, l\u2019acc\u00e8s aux soins de sant\u00e9, les proc\u00e9dures administratives, les droits sociaux, l\u2019\u00e9ducation, le travail, la vie familiale et l\u2019inclusion sociale.<\/p>\n<p>En 2019, les assistants sociaux et psychologues d\u2019ALAN ont soutenu 398 patients et leurs familles. L\u2019association a constat\u00e9 une importante augmentation des demandes au fil des derniers ans. En effet, le nombre de demandes a quasiment doubl\u00e9 en trois ans, ce qui a men\u00e9 ALAN \u00e0 consid\u00e9rablement augmenter le nombre de consultations psycho-sociales offertes gratuitement aux concern\u00e9s.<\/p>\n<p>Parmi les 208 maladies diff\u00e9rentes que le service a rencontr\u00e9, les plus fr\u00e9quentes \u00e9taient celles touchant le syst\u00e8me nerveux, les muscles et le syst\u00e8me immunitaire. L\u2019analyse d\u00e9mographique des demandes montre cependant que les maladies rares ne pratiquent aucune forme de discrimination : des personnes de tout \u00e2ge, sexe, r\u00e9gion et nationalit\u00e9 sont affect\u00e9es.[\/vc_column_text][vc_empty_space height=&#8221;30px&#8221;][vc_column_text]<strong>L\u2019Infoline Maladies Rares Luxembourg<\/strong><\/p>\n<p>En Novembre 2019, 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 pour les personnes touch\u00e9es par une maladie rare, leur entourage et les professionnels de la sant\u00e9. Ce service est assur\u00e9 par l\u2019\u00e9quipe de consultation d\u2019ALAN sur mandat de la Direction de la Sant\u00e9. L\u2019adresse de courriel et la ligne t\u00e9l\u00e9phonique mise en place sont \u00e0 la disposition des quelques 30.000 personnes concern\u00e9es au Luxembourg, afin de faciliter une prise en charge ad\u00e9quate.<\/p>\n<p>Par ailleurs, les membres de l\u2019\u00e9quipe op\u00e9rationnelle et du Conseil d\u2019Administration d\u2019ALAN ont particip\u00e9 dans d\u2019autres groupes de travail du plan national en 2019. Deux aspects particuliers concernent le recensement des maladies rares au pays et l\u2019\u00e9laboration d\u2019un guide d\u2019orientation pour les personnes vivant avec une maladie rare.[\/vc_column_text][vc_empty_space height=&#8221;30px&#8221;][\/vc_column][vc_column width=&#8221;1\/2&#8243;][vc_column_text]<strong>Le service d\u2019activit\u00e9s r\u00e9cr\u00e9atives<\/strong><\/p>\n<p>ALAN organise des activit\u00e9s r\u00e9cr\u00e9atives et sportives adapt\u00e9es pour ses membres concern\u00e9s par une maladie rare, afin de favoriser leur bien-\u00eatre, leur confiance et leur estime de soi. En 2019, 52 adultes et enfants ont profit\u00e9 de cette offre en participant r\u00e9guli\u00e8rement aux cours de relaxation, aux activit\u00e9s aquatiques ou encore aux journ\u00e9es de d\u00e9couverte de la th\u00e9rapie \u00e9questre.[\/vc_column_text][vc_empty_space height=&#8221;30px&#8221;][vc_column_text]<strong>L\u2019engagement international &amp; la sensibilisation<\/strong><\/p>\n<p>Pour d\u00e9fendre les int\u00e9r\u00eats de toutes les personnes touch\u00e9es par une maladie rare, ainsi que des associations qui les repr\u00e9sentent, ALAN d\u00e9veloppe et renforce des partenariats internationaux. Ainsi, ALAN s\u2019associe aux organisations et initiatives internationales qui visent \u00e0 apporter une meilleure reconnaissance des maladies rares et des changements politiques. En 2019, les membres du Conseil d\u2019Administration et de la direction d\u2019ALAN ont particip\u00e9 \u00e0 8 conf\u00e9rences, workshops et campagnes de sensibilisation internationales.<\/p>\n<p>Au Luxembourg, l\u2019association s\u2019engage aussi particuli\u00e8rement pour la sensibilisation du public et des institutions de l\u2019\u00e9ducation, de la politique, du secteur de sant\u00e9 et du secteur social. Le but de ces campagnes est de faire connaitre, faire comprendre et faire r\u00e9agir. En 2019, ALAN a particip\u00e9 \u00e0 11 \u00e9v\u00e9nements grand public et a lanc\u00e9 r\u00e9guli\u00e8rement des campagnes de sensibilisation \u00e0 travers la presse et les r\u00e9seaux sociaux.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=&#8221;30px&#8221;][vc_column_text]<\/p>\n<p style=\"text-align: center;\">Le rapport d\u2019activit\u00e9s est disponible <a href=\"https:\/\/alan.lu\/downloads\/rapports\/9522.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">ici<\/a>.<\/p>\n<p>[\/vc_column_text][vc_empty_space height=&#8221;30px&#8221;][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>En 2019, ALAN a soutenu pr\u00e8s de 400 patients et familles touch\u00e9s par une maladie rare, repr\u00e9sentant plus de 200 maladies diff\u00e9rentes. Le nombre de consultations psycho-sociales effectu\u00e9es par l\u2019\u00e9quipe pluridisciplinaire d\u2019ALAN en 2019 a augment\u00e9 de 40% par rapport \u00e0 l\u2019ann\u00e9e pr\u00e9c\u00e9dente.<\/p>\n","protected":false},"author":1,"featured_media":21114,"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-21113","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 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rapport d\u2019Activit\u00e9s 2019 - 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\/rapport-d-activites-2019\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rapport d\u2019Activit\u00e9s 2019 - ALAN\" \/>\n<meta property=\"og:description\" content=\"En 2019, ALAN a soutenu pr\u00e8s de 400 patients et familles touch\u00e9s par une maladie rare, repr\u00e9sentant plus de 200 maladies diff\u00e9rentes. 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