{"id":1654,"date":"2024-02-20T08:34:00","date_gmt":"2024-02-20T07:34:00","guid":{"rendered":"https:\/\/amyloidosisalliance.local\/la-journee-des-maladies-rares-2024-approche\/"},"modified":"2026-09-29T15:32:14","modified_gmt":"2026-09-29T13:32:14","slug":"la-journee-des-maladies-rares-2024-approche","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/la-journee-des-maladies-rares-2024-approche\/","title":{"rendered":"La Journ\u00e9e des maladies rares 2024 approche\u202f!"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Le 29 f\u00e9vrier est la Journ\u00e9e mondiale des maladies rares, une occasion particuli\u00e8re de sensibiliser le public aux difficult\u00e9s des personnes qui vivent avec une maladie rare. Cette ann\u00e9e encore, l\u2019Amyloidosis Alliance se mobilise dans le monde entier pour soutenir la cause et montrer l\u2019impact de l\u2019amylose. Chaque <a href=\"https:\/\/www.amyloidosisalliance.org\/fr\/membres\/\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-pale-cyan-blue-color\">membre<\/mark><\/a> de l\u2019Alliance y contribue \u00e0 sa mani\u00e8re, dans son pays.<\/p>\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/rarediseaseday.org\/\">J<\/a><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-pale-cyan-blue-color\"><a href=\"http:\/\/rarediseaseday.org\/\">ourn\u00e9e internationale des maladies rares\u00a0:<\/a> <\/mark>un rendez-vous incontournable c\u00e9l\u00e9br\u00e9 chaque ann\u00e9e, symboliquement le 29 f\u00e9vrier les ann\u00e9es bissextiles. Cette journ\u00e9e offre une tribune essentielle pour sensibiliser le public, encourager la recherche et favoriser l\u2019acc\u00e8s aux traitements pour les personnes atteintes de maladies rares.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-luminous-vivid-orange-color\">L\u2019Amyloidosis Alliance, un acteur engag\u00e9 de la Journ\u00e9e des maladies rares<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">\u00c0 l\u2019occasion de cette journ\u00e9e exceptionnelle, l\u2019Amyloidosis Alliance s\u2019affirme comme un acteur engag\u00e9 dans la lutte contre les maladies rares. L\u2019amylose est une maladie caract\u00e9ris\u00e9e par le d\u00e9p\u00f4t anormal de prot\u00e9ines dans les tissus et les organes, qui entra\u00eene de graves complications. Malheureusement, en raison de sa raret\u00e9, l\u2019amylose est souvent mal diagnostiqu\u00e9e, ce qui retarde un traitement adapt\u00e9.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-vivid-cyan-blue-color\">Sensibiliser et mobiliser\u00a0: les objectifs de l\u2019Amyloidosis Alliance pour la Journ\u00e9e des maladies rares<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">L\u2019Amyloidosis Alliance profitera de cette journ\u00e9e pour intensifier ses actions de sensibilisation, en mettant en avant les difficult\u00e9s rencontr\u00e9es par les patients atteints d\u2019amylose. L\u2019association souhaite aussi mobiliser des moyens pour soutenir la recherche, afin de mieux comprendre la maladie et de d\u00e9velopper des traitements plus efficaces.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-vivid-green-cyan-color\">Comment participer \u00e0 la Journ\u00e9e des maladies rares<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">Vous pouvez vous associer \u00e0 l\u2019engagement de l\u2019Alliance en participant activement \u00e0 la Journ\u00e9e des maladies rares. Suivez les r\u00e9seaux sociaux de l\u2019Alliance, partagez les informations utiles et utilisez le hashtag officiel de la journ\u00e9e pour donner plus de port\u00e9e aux messages de sensibilisation. Vous pouvez aussi soutenir les actions, les recherches et les initiatives de chacun des membres de l\u2019Alliance dans le monde.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-pale-pink-color\">Faire la diff\u00e9rence ensemble<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">La Journ\u00e9e internationale des maladies rares est une occasion pr\u00e9cieuse de faire conna\u00eetre au public des r\u00e9alit\u00e9s souvent m\u00e9connues. En unissant nos forces \u00e0 celles de l\u2019Amyloidosis Alliance, chacun de nous peut contribuer \u00e0 faire avancer la recherche, \u00e0 am\u00e9liorer la prise en charge des patients et \u00e0 faire progresser la cause des maladies rares. <\/p>\n\n<p class=\"wp-block-paragraph\">Le 29 f\u00e9vrier, rejoignez cette initiative mondiale et soyez la voix de celles et ceux qui luttent contre l\u2019amylose.<\/p>\n\n<div style=\"height:49px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-image size-full is-resized\"><img decoding=\"async\" src=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2022\/06\/cropped-cropped-logo.jpg\" alt=\"\" class=\"wp-image-5208\" style=\"width:218px;height:auto\"\/><\/figure>\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n","protected":false},"excerpt":{"rendered":"<p>La Journ\u00e9e des maladies rares a lieu le 29 f\u00e9vrier 2024. Comment l\u2019Amyloidosis Alliance et ses membres se mobilisent pour faire conna\u00eetre l\u2019amylose parmi les maladies rares.<\/p>\n","protected":false},"author":1,"featured_media":1655,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-1654","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La Journ\u00e9e des maladies rares 2024 approche\u202f!<\/title>\n<meta name=\"description\" content=\"La Journ\u00e9e des maladies rares a lieu le 29 f\u00e9vrier 2024. 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