{"id":29873,"date":"2024-11-04T13:06:22","date_gmt":"2024-11-04T12:06:22","guid":{"rendered":"https:\/\/alan.lu\/?page_id=29873"},"modified":"2025-09-22T12:09:21","modified_gmt":"2025-09-22T10:09:21","slug":"alliance-nationale-maladies-rares","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/alliance-nationale-maladies-rares\/","title":{"rendered":"Alliance Nationale Maladies Rares"},"content":{"rendered":"

[vc_row][vc_column][vc_column_text css=””]<\/p>\n

Alliance Nationale 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=””]En 2021 dans le cadre du Plan National Maladies Rares, ALAN a obtenu le mandat officiel du minist\u00e8re de la Sant\u00e9 de g\u00e9rer l\u2019Alliance Nationale Maladies Rares <\/em>(ANMR), afin de f\u00e9d\u00e9rer les associations \u0153uvrant dans le domaine de maladies rares sp\u00e9cifiques au Luxembourg.<\/p>\n

L\u2019alliance nationale vise \u00e0 regrouper et \u00e0 d\u00e9fendre les int\u00e9r\u00eats<\/strong> collectifs de la communaut\u00e9 des personnes vivant avec une maladie rare, ainsi que des associations qui les repr\u00e9sentent, tant au niveau national qu\u2019europ\u00e9en, pour revendiquer une meilleure reconnaissance, l\u2019\u00e9galit\u00e9 des chances et des changements politiques am\u00e9liorant la qualit\u00e9 de vie des personnes concern\u00e9es.[\/vc_column_text][vc_empty_space height=”15px”][vc_column_text css=””]Afin d\u2019optimiser l\u2019\u00e9change et la collaboration entre les diff\u00e9rentes associations, ALAN a mis en place la Plateforme de l\u2019Alliance Nationale Maladies Rares Luxembourg<\/em>. Actuellement les associations et fondations suivantes y participent\u00a0:[\/vc_column_text][vc_empty_space height=”15px”]

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  1. Association Luxembourgeoise des H\u00e9mophiles<\/a><\/li>\n
  2. Association Luxembourgeoise de Lutte contre la Mucoviscidose<\/a><\/li>\n
  3. Association Luxembourgeoise du Syndrome de Rett<\/a><\/li>\n
  4. CASK Luxembourg<\/li>\n
  5. den-i Syndrome de Marfan Luxembourg<\/a><\/li>\n
  6. Een H\u00e4erz fir kriibskrank Kanner<\/a><\/li>\n
  7. EDS L\u00ebtzebuerg<\/a><\/li>\n
  8. ELA Luxembourg<\/a><\/li>\n
  9. Fondatioun Kriibskrank Kanner<\/a><\/li>\n
  10. Association Luxembourgeoise d\u2019Aide aux Enfants Cardiaques<\/a><\/li>\n
  11. W\u00e4ertvollt Liewen<\/a><\/li>\n<\/ol>\n<\/div>[vc_empty_space height=”15px”][\/vc_column][vc_column width=”1\/2″][vc_column_text css=””]Les membres de la plateforme de l\u2019alliance nationale se r\u00e9unissent r\u00e9guli\u00e8rement pour se concerter sur des actions concr\u00e8tes \u00e0 mettre en place, notamment la contribution au Plan National Maladies Rares (PNMR), le lancement de campagnes de sensibilisation, des initiatives de lobbying, et l\u2019organisation de formations pour les patients.<\/p>\n

    L\u2019alliance nationale collabore en outre avec d\u2019autres associations de patients luxembourgeoises, le Cercle des Associations de Patients<\/a>, Info-Handicap<\/a>, et les organisations internationales pertinentes, telles que EURORDIS<\/a>, l\u2019AFM-T\u00e9l\u00e9thon<\/a>, ou encore l\u2019Alliance fran\u00e7aise pour les 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][vc_column width=”1\/6″][vc_single_image image=”30523″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/www.alh.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”30520″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/allm.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”30517″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/alsr.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”30755″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=””][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”25543″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/den-i.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”29641″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/kriibskrankkanner.lu\/”][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/6″][vc_single_image image=”25546″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/edsletzebuerg.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”30514″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/ela-asso.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”25549″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/fondatioun.lu\/en\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”29660″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/www.alaec.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][vc_single_image image=”25558″ img_size=”medium” onclick=”custom_link” img_link_target=”_blank” css=”” link=”https:\/\/www.waertvollt-liewen.lu\/”][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/6″][\/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 css=””] Alliance Nationale Maladies Rares [\/vc_column_text][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/2″][vc_column_text css=””]En 2021 dans le cadre du Plan National Maladies Rares, ALAN a obtenu le mandat officiel du minist\u00e8re de la Sant\u00e9…<\/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-29873","page","type-page","status-publish","hentry"],"yoast_head":"\nAlliance Nationale Maladies Rares 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\/alliance-nationale-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Alliance Nationale Maladies Rares Maladies Rares Luxembourg - ALAN\" \/>\n<meta property=\"og: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 property=\"og:url\" content=\"https:\/\/alan.lu\/fr\/alliance-nationale-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"ALAN\" \/>\n<meta property=\"article:modified_time\" content=\"2025-09-22T10:09:21+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/alan.lu\/fr\/alliance-nationale-maladies-rares\/\",\"url\":\"https:\/\/alan.lu\/fr\/alliance-nationale-maladies-rares\/\",\"name\":\"Alliance Nationale Maladies Rares Maladies Rares Luxembourg - 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