{"id":1588,"date":"2022-08-01T18:13:00","date_gmt":"2022-08-01T16:13:00","guid":{"rendered":"https:\/\/amyloidosisalliance.local\/la-journee-mondiale-de-lamylose\/"},"modified":"2026-09-29T15:32:10","modified_gmt":"2026-09-29T13:32:10","slug":"la-journee-mondiale-de-lamylose","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/la-journee-mondiale-de-lamylose\/","title":{"rendered":"La Journ\u00e9e mondiale de l\u2019amylose"},"content":{"rendered":"\n<h2>La Journ\u00e9e mondiale de l\u2019amylose 2022<\/h2>\nPour faire savoir que les patients atteints d\u2019amylose sont diagnostiqu\u00e9s apr\u00e8s 4 ans en moyenne, et pour rassembler toutes les personnes concern\u00e9es par la maladie, l\u2019Amyloidosis Alliance et plusieurs autres organisations de patients ont d\u00e9cid\u00e9 de cr\u00e9er en 2021 la Journ\u00e9e mondiale de l\u2019amylose, qui r\u00e9unit pas moins de 18 pays sur 4 continents.\n<h2>L\u2019amylose est une maladie rare, complexe et multiforme.<\/h2>\nL\u2019amylose reste mal connue du grand public et des professionnels de sant\u00e9, ce qui la rend d\u2019autant plus difficile \u00e0 d\u00e9tecter. Or, plus le diagnostic tarde, plus les risques sont grands. Sans traitement rapide, l\u2019esp\u00e9rance de vie est de 3 \u00e0 5 ans pour les formes les plus s\u00e9v\u00e8res.\n\nL\u2019objectif de la journ\u00e9e de cette ann\u00e9e, le 26 octobre 2022, est donc de rassembler le plus de personnes possible contre l\u2019amylose et de faire conna\u00eetre la communaut\u00e9 de l\u2019amylose \u00e0 un large public.\n\nIl est d\u00e9sormais essentiel de mettre en place de telles actions et de se montrer solidaires, pour faire conna\u00eetre la maladie et garantir un acc\u00e8s plus rapide et de meilleure qualit\u00e9 au diagnostic et aux soins. C\u2019est en diffusant la connaissance de l\u2019amylose aupr\u00e8s de tous les praticiens que nous am\u00e9liorerons la suspicion diagnostique et r\u00e9duirons les erreurs de diagnostic.\n<h2>\nC\u2019est ensemble que nous pourrons progresser.<\/h2>\nIl est donc important de se retrouver le m\u00eame jour pour rassembler patients, aidants et tous les autres acteurs. C\u2019est pourquoi la Journ\u00e9e mondiale de l\u2019amylose s\u2019adresse \u00e0 tous\u00a0: autorit\u00e9s et professionnels de sant\u00e9, travailleurs sociaux, entreprises pharmaceutiques, chercheurs, b\u00e9n\u00e9voles, associations\u2026 chacun de vous peut renforcer notre combat et nous aider \u00e0 avancer.\n<h3>Pour soutenir les patients et leurs familles, soyons le lien qui les maintient en vie.<\/h3>\n\u00c0 l\u2019heure o\u00f9 le num\u00e9rique compte plus que jamais, nous avons aussi lanc\u00e9 sur les r\u00e9seaux sociaux une campagne de sensibilisation num\u00e9rique appel\u00e9e \u00ab\u00a0Be the Link\u00a0\u00bb. En partageant le lien orange Be the Link, vous pouvez vous aussi contribuer \u00e0 faire conna\u00eetre la maladie en ligne.\n","protected":false},"excerpt":{"rendered":"<p>La Journ\u00e9e mondiale de l\u2019amylose a \u00e9t\u00e9 cr\u00e9\u00e9e en 2021 pour faire conna\u00eetre l\u2019amylose, une maladie souvent diagnostiqu\u00e9e avec des ann\u00e9es de retard. L\u2019\u00e9dition 2022 a lieu le 26 octobre.<\/p>\n","protected":false},"author":1,"featured_media":1589,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-1588","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 mondiale de l\u2019amylose<\/title>\n<meta name=\"description\" content=\"La Journ\u00e9e mondiale de l\u2019amylose a \u00e9t\u00e9 cr\u00e9\u00e9e en 2021 pour faire conna\u00eetre l\u2019amylose, une maladie souvent diagnostiqu\u00e9e avec des ann\u00e9es de retard. 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