{"id":20738,"date":"2020-10-23T09:06:30","date_gmt":"2020-10-23T07:06:30","guid":{"rendered":"https:\/\/alan.wearequattro.com\/advocacy\/"},"modified":"2024-11-04T13:50:53","modified_gmt":"2024-11-04T12:50:53","slug":"mobilisation","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/mobilisation\/","title":{"rendered":"Mobilisation"},"content":{"rendered":"

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Faire entendre vos voix et rencontrer vos besoins<\/strong><\/h2>\n

[\/vc_column_text][vc_empty_space height=”14px”][vc_column_text css=””]R\u00e9aliser notre vision d’un environnement o\u00f9 les personnes atteintes d’une maladie rare peuvent r\u00e9aliser leur plein potentiel n’est possible que gr\u00e2ce \u00e0 un travail de plaidoyer intense. Pour remplir sa mission en tant qu’Alliance Nationale Maladies Rares<\/a>, ALAN se concentre sur les aspects suivants pour revendiquer une meilleure reconnaissance, l’\u00e9galit\u00e9 des chances et des changements politiques qui am\u00e9liorent la qualit\u00e9 de vie des personnes vivant avec une maladie rare :[\/vc_column_text]

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Plaidoyer national<\/strong><\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]ALAN participe activement \u00e0 la mise en \u0153uvre du Plan National des Maladies Rares<\/strong>. Plusieurs membres de l\u2019\u00e9quipe op\u00e9rationnelle et du Conseil d\u2019administration d\u2019ALAN si\u00e8gent au Comit\u00e9 national des maladies rares<\/strong>. En outre, ils sont impliqu\u00e9s dans pas moins de 12 groupes de travail diff\u00e9rents au sein du Plan National, concernant, par exemple, l’\u00e9tablissement d’un registre national des maladies rares, la cr\u00e9ation d’une cellule d’orientation pour les maladies rares et le remboursement des m\u00e9dicaments.<\/p>\n

ALAN se coordonne avec les responsables gouvernementaux et publie des d\u00e9clarations pour attirer leur attention sur des probl\u00e8mes sp\u00e9cifiques, tels que l’acc\u00e8s au traitement pendant la pand\u00e9mie de la COVID-19<\/strong> ou le transport scolaire pour les enfants ayant des besoins sp\u00e9cifiques. De plus, ALAN organise et participe \u00e0 des conf\u00e9rences nationales, des ateliers et des tables rondes pour sensibiliser sp\u00e9cifiquement aux maladies rares dans les secteurs des soins de sant\u00e9, social et \u00e9ducatif.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=”1\/2″][vc_column_text]<\/p>\n

Partenariats internationaux<\/strong><\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]Pour d\u00e9fendre les int\u00e9r\u00eats de toutes les personnes touch\u00e9es par une maladie rare, ainsi que leurs associations respectives, tant au niveau national qu’international, ALAN d\u00e9veloppe et entretient de nombreux partenariats transfrontaliers. ALAN collabore avec des organisations internationales ayant des objectifs similaires telles que l’AFM-T\u00e9l\u00e9thon<\/strong>, l’Alliance fran\u00e7aise pour les maladies rares ou encore EURORDIS<\/strong>, une alliance internationale regroupant plus de 900 associations de patients atteints de maladies rares. Depuis 2005, ALAN est reconnue comme l’alliance nationale luxembourgeoise par EURORDIS et participe activement aux r\u00e9unions semestrielles du \u00ab Conseil des alliances nationales \u00bb ainsi qu’aux projets internationaux, telle que le projet \u00ab Rare 2030<\/a> \u00bb campagnes de sensibilisation et congr\u00e8s.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_single_image image=”22021″ img_size=”full”][vc_empty_space height=”50px”][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=”1\/2″][vc_single_image image=”20747″ img_size=”full”][vc_empty_space height=”50px”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text]<\/p>\n

Sensibilisation<\/strong><\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]La sensibilisation du grand public, des d\u00e9cideurs politiques, des professionnels de la sant\u00e9, des \u00e9tablissements d\u2019enseignement et des organisations sociales aux maladies rares a toujours fait partie int\u00e9grante de la mission d\u2019ALAN. Chaque ann\u00e9e, ALAN participe \u00e0 de nombreux \u00e9v\u00e9nements grand public \u00e0 travers des stands d’information ou des pr\u00e9sentations. L\u2019\u00e9quipe de consultation d\u2019ALAN propose \u00e9galement des visites dans les \u00e9coles accueillant un enfant atteint d\u2019une maladie rare, aidant ainsi les enseignants et les camarades de classe \u00e0 comprendre l\u2019impact de la maladie sur l\u2019enfant. Enfin, ALAN lance r\u00e9guli\u00e8rement des campagnes de communication via les m\u00e9dias traditionnels et sociaux. Le but de ces campagnes est de faire prendre conscience, de faciliter la compr\u00e9hension et de provoquer des r\u00e9actions.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=”1\/2″][vc_column_text]<\/p>\n

Autonomisation des patients<\/strong><\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]ALAN vise \u00e0 faire en sorte que les personnes atteintes d’une maladie rare trouvent les ressources personnelles et la confiance n\u00e9cessaires pour prendre les d\u00e9cisions et les actions affectant leur sant\u00e9 et leur bien-\u00eatre. Ainsi, ALAN organise r\u00e9guli\u00e8rement des sessions d’information, des formations p\u00e9dagogiques et des ateliers int\u00e9ressant la communaut\u00e9 des maladies rares. ALAN encourage \u00e9galement la participation \u00e0 certaines enqu\u00eates internationales aupr\u00e8s des patients pour orienter les changements de politique, comme les enqu\u00eates Rare Barometer Voices d’EURORDIS.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_single_image image=”22015″ img_size=”full”][vc_empty_space height=”50px”][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row content_width=”grid” css=”.vc_custom_1596118384380{padding-top: 36px !important;padding-bottom: 41px !important;background-color: #ee3f75 !important;}”][vc_column css=”.vc_custom_1492609383973{padding-top: 2px !important;}”]\t

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Contactez-nous en cas de questions ou besoin d\u2019assistance<\/span><\/h2>\n\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\t<\/div>\n\t\t\t<\/div>\n[\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

[vc_row content_width=”grid”][vc_column][vc_column_text] Faire entendre vos voix et rencontrer vos besoins [\/vc_column_text][vc_empty_space height=”14px”][vc_column_text css=””]R\u00e9aliser notre vision d’un environnement o\u00f9 les personnes atteintes d’une maladie rare peuvent r\u00e9aliser leur plein potentiel n’est…<\/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-20738","page","type-page","status-publish","hentry"],"yoast_head":"\nMobilisation, discover the daily challenges - ALAN<\/title>\n<meta name=\"description\" content=\"Living with a rare disease can bring out various life challenges, even though rare diseases vary widely in their symptoms, treatment and care.\" \/>\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\/mobilisation\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mobilisation, discover the daily challenges - 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