{"id":20662,"date":"2020-08-27T16:34:24","date_gmt":"2020-08-27T14:34:24","guid":{"rendered":"https:\/\/alan.wearequattro.com\/national-plan\/"},"modified":"2024-09-04T11:19:39","modified_gmt":"2024-09-04T09:19:39","slug":"plan-national","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/plan-national\/","title":{"rendered":"Plan National"},"content":{"rendered":"

[vc_row][vc_column][vc_column_text]<\/p>\n

Le Plan National Maladies Rares<\/h2>\n

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<\/div>\n<\/div>\n[\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/2″][vc_column_text css=””]Le Luxembourg anticipe actuellement la mise en \u0153uvre de son deuxi\u00e8me Plan National Maladies Rares (PNMR). Le permier PNMR a \u00e9t\u00e9 pr\u00e9sent\u00e9 au public le 7 mai 2018 par la Ministre de la Sant\u00e9, Lydia Mutsch. Il est le fruit d\u2019un travail collaboratif de 70 experts des diff\u00e9rents secteurs li\u00e9s aux maladies rares, notamment la sant\u00e9, le domaine psycho-social, l\u2019\u00e9ducation, la recherche et les associations de patients. Ce premier Plan National Maladies Rares couvrait la p\u00e9riode 2018-2023.<\/p>\n

Le but de ce plan est de mieux r\u00e9pondre aux besoins et attentes des patients et de leur famille, donc de mieux orienter, coordonner et structurer les actions relevant du domaine des maladies rares. Cinq axes strat\u00e9giques ont \u00e9t\u00e9 d\u00e9velopp\u00e9s, afin de r\u00e9pondre \u00e0 cet objectif :[\/vc_column_text][vc_empty_space height=”15px”]

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  1. Gouvernance et gestion du plan (axe g\u00e9n\u00e9ral)<\/span>,<\/li>\n
  2. Am\u00e9liorer le syst\u00e8me de soins et de prise en charge (Axe A),<\/li>\n
  3. Faciliter l\u2019acc\u00e8s \u00e0 l\u2019information sur les maladies rares, par la cr\u00e9ation d\u2019une plateforme nationale (Axe B),<\/li>\n
  4. Mieux reconna\u00eetre la sp\u00e9cificit\u00e9 des maladies rares et en promouvoir la recherche (Axe C),<\/li>\n
  5. R\u00e9pondre aux besoins d\u2019accompagnement psycho-social des patients et de leur entourage (Axe D).<\/li>\n<\/ol>\n<\/div>[\/vc_column][vc_column width=”1\/2″][vc_column_text]Le Plan National Maladies Rares et sa mise en \u0153uvre doivent d\u00e9finir et garantir l’\u00e9galit\u00e9 d’acc\u00e8s au diagnostic, \u00e0 la th\u00e9rapie et aux soins pour toutes les personnes atteintes d’une maladie rare.[\/vc_column_text][vc_single_image image=”20663″ img_size=”medium” alignment=”center”][vc_column_text]En 2019, le service \u00ab Infoline Maladies Rares Luxembourg \u00bb a \u00e9t\u00e9 lanc\u00e9 dans le cadre du premier Plan National Maladies Rares. Il s’agit d’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

    En janvier 2022, le \u00ab\u00a0Guide d’orientation luxembourgeois pour les personnes vivant avec une maladie rare<\/a>\u00a0\u00bb a \u00e9t\u00e9 publi\u00e9. Le guide propose aux personnes et familles concern\u00e9es par une maladie rare, un recensement des services disponibles dans les diff\u00e9rents domaines (m\u00e9decine, s\u00e9curit\u00e9 sociale, \u00e9cole, finances, etc.), ainsi qu\u2019un soutien pour les orienter et aider dans les diff\u00e9rentes d\u00e9marches.<\/p>\n

    En savoir plus sur l’Infoline<\/a>.<\/p>\n

    En savoir plus sur le Plan National Maladies Rares<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid” css=”.vc_custom_1601640129370{padding-top: 36px !important;padding-bottom: 41px !important;}” el_id=”wrapper-contact-next-btn”][vc_column width=”1\/2″ el_id=”wrapper-contact-next-col-1″]\t

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    Contactez-nous en cas de questions ou besoin d\u2019assistance<\/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
    \n\t\t\t\t\t\t\tContact<\/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=”1\/2″]\t
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    Qu’est-ce qu’une 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
    \n\t\t\t\t\t\t\tEn savoir plus<\/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":"

    [vc_row][vc_column][vc_column_text] Le Plan National Maladies Rares [\/vc_column_text][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/2″][vc_column_text css=””]Le Luxembourg anticipe actuellement la mise en \u0153uvre de son deuxi\u00e8me Plan National Maladies Rares (PNMR). Le permier PNMR a \u00e9t\u00e9…<\/p>\n","protected":false},"author":1,"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-20662","page","type-page","status-publish","hentry"],"yoast_head":"\nPlan National Maladies Rares Luxembourg - ALAN<\/title>\n<meta name=\"description\" content=\"Le Plan National Maladies Rares et sa mise en \u0153uvre doivent d\u00e9finir et garantir l\u2019\u00e9galit\u00e9 d\u2019acc\u00e8s au diagnostic, \u00e0 la th\u00e9rapie et aux soins pour toutes les personnes atteintes d\u2019une maladie rare.\" \/>\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\/plan-national\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Plan National Maladies Rares Luxembourg - 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