{"id":20674,"date":"2020-10-07T17:16:39","date_gmt":"2020-10-07T15:16:39","guid":{"rendered":"https:\/\/alan.wearequattro.com\/resources\/"},"modified":"2024-11-04T08:41:24","modified_gmt":"2024-11-04T07:41:24","slug":"resources","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/resources\/","title":{"rendered":"Ressources"},"content":{"rendered":"

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Ressources sp\u00e9cifiques<\/h2>\n

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GUIDE D’ORIENTATION<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]Le \u00ab Guide d’orientation luxembourgeois pour les personnes vivant avec une maladie rare \u00bb 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.<\/span><\/p>\n

consulter le guide<\/a>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/3″][vc_column_text]<\/p>\n

AFM-TELETHON<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.afm-telethon.com<\/a><\/p>\n

L’Association Fran\u00e7aise contre les Myopathies (AFM-T\u00e9l\u00e9thon) est une association de parents et de malades qui m\u00e8ne un combat sans rel\u00e2che contre des maladies g\u00e9n\u00e9tiques, rares et lourdement invalidantes.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

EUPATI<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.eupati.eu<\/a><\/p>\n

EUPATI (European Patients\u2019 Academy on Therapeutic Innovation) est un partenariat public-priv\u00e9 multipartite. EUPATI propose des formations pour renforcer les capacit\u00e9s des patients et des repr\u00e9sentants des patients \u00e0 comprendre et \u00e0 contribuer de mani\u00e8re significative \u00e0 la recherche et au d\u00e9veloppement de m\u00e9dicaments, et pour am\u00e9liorer la disponibilit\u00e9 des informations m\u00e9dicales pour les patients et autres parties prenantes.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

EURORDIS<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.eurordis.org<\/a><\/p>\n

Alliance \u00e0 but non lucratif, EURORDIS-Rare Diseases Europe regroupe 944 associations de patients atteints de maladie rare, repr\u00e9sentant 73 pays. EURORDIS vise \u00e0 am\u00e9liorer la qualit\u00e9 de vie des personnes vivant avec des maladies rares en Europe \u00e0 travers un plaidoyer pour des changements politiques au niveau europ\u00e9en, un soutien pour la recherche et le d\u00e9veloppement de m\u00e9dicaments, des actions de sensibilisation et en facilitant la mise en r\u00e9seau entre les groupes de patients.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/3″][vc_column_text]<\/p>\n

MYOBASE<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.myobase.org<\/a><\/p>\n

Myobase est un portail documentaire sur les maladies neuromusculaires, cr\u00e9e par AFM-T\u00e9l\u00e9thon.<\/span>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

ORPHANET<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.orpha.net<\/a><\/p>\n

Le portail europ\u00e9en des maladies rares et des m\u00e9dicaments orphelins. Orphanet est une ressource unique, rassemblant et am\u00e9liorant la connaissance sur les maladies rares, afin de faciliter et de perfectionner le diagnostic, le soin et le traitement des patients atteints de maladies rares. La plateforme Orphanet contient des r\u00e9pertoires des maladies rares, des centres experts, des essais cliniques, des registres, des m\u00e9dicaments orphelins et beaucoup plus.<\/span>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text css=””]<\/p>\n

JARDIN<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text css=””]www.jardin-ern.eu\/<\/a><\/p>\n

JARDIN est une \u00ab Joint Action \u00bb europ\u00e9enne visant \u00e0 am\u00e9liorer l’accessibilit\u00e9 aux r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERN) en les int\u00e9grant dans les syst\u00e8mes nationaux de sant\u00e9.<\/span>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=”50px”][vc_column_text]<\/p>\n

Ressources g\u00e9n\u00e9rales<\/h2>\n

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INFO-HANDICAP LUXEMBOURG<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]info-handicap.lu<\/a><\/p>\n

Depuis 1993, le Centre National d\u2019Information et de Rencontre du Handicap est \u00e0 l\u2019\u00e9coute des personnes handicap\u00e9es, de leurs familles, des professionnels et, d\u2019une fa\u00e7on g\u00e9n\u00e9rale, de toute personne \u00e0 la recherche de renseignements sp\u00e9cifiques.<\/span>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

SANTE.LU<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.sante.public.lu<\/a><\/p>\n

Le site officiel du Minist\u00e8re de la Sant\u00e9 luxembourgeois.<\/span>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

TELETHON LUXEMBOURG<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.telethon.lu<\/a><\/p>\n

Le T\u00e9l\u00e9thon Luxembourg collecte des fonds pour la recherche sur les maladies rares et le soutien psychosocial des personnes vivant avec une maladie rare. Il est organis\u00e9 par la Fondation Lions District 113 Luxembourg.<\/span>[\/vc_column_text][vc_empty_space height=”50px”][\/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_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][vc_column][vc_column_text] Ressources sp\u00e9cifiques [\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column][vc_column_text] GUIDE D’ORIENTATION [\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]Le \u00ab Guide d’orientation luxembourgeois pour les personnes vivant avec une maladie rare \u00bb propose aux personnes et familles concern\u00e9es par…<\/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-20674","page","type-page","status-publish","hentry"],"yoast_head":"\nRessources: more than a plan, a collaboration - ALAN<\/title>\n<meta name=\"description\" content=\"The National Plan for Rare Diseases is critical to guarantee equal access to diagnostics, therapy, care and research for all rare disease patients.\" \/>\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\/resources\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ressources: more than a plan, a collaboration - 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