{"id":1657,"date":"2024-02-08T08:31:00","date_gmt":"2024-02-08T07:31:00","guid":{"rendered":"https:\/\/amyloidosisalliance.local\/mettre-en-lumiere-la-journee-des-maladies-rares-la-campagne-video-de-lamyloidosis-alliance\/"},"modified":"2026-09-29T15:32:14","modified_gmt":"2026-09-29T13:32:14","slug":"mettre-en-lumiere-la-journee-des-maladies-rares-la-campagne-video-de-lamyloidosis-alliance","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/mettre-en-lumiere-la-journee-des-maladies-rares-la-campagne-video-de-lamyloidosis-alliance\/","title":{"rendered":"Mettre en lumi\u00e8re la Journ\u00e9e des maladies rares\u00a0: la campagne vid\u00e9o de l\u2019Amyloidosis Alliance"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Alors que le monde se pr\u00e9pare \u00e0 c\u00e9l\u00e9brer la Journ\u00e9e des maladies rares le 29 f\u00e9vrier, la campagne vid\u00e9o de l\u2019Amyloidosis Alliance est en premi\u00e8re ligne pour sensibiliser et soutenir les personnes touch\u00e9es par l\u2019<mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-luminous-vivid-orange-color\"><a href=\"\/amyloidosis\/#disease\"> amylose<\/a>.<\/mark> \u00c0 l\u2019approche de cette journ\u00e9e importante, l\u2019Alliance lance une campagne vid\u00e9o percutante pour \u00e9clairer diff\u00e9rents aspects de cette maladie rare. D\u00e9couvrons le c\u0153ur de cette initiative et les vid\u00e9os marquantes qui traduisent l\u2019esprit de solidarit\u00e9, de gratitude et de progr\u00e8s de la communaut\u00e9 de l\u2019amylose.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Les aidants, h\u00e9ros de l\u2019ombre<\/strong><br\/>La premi\u00e8re vid\u00e9o de la campagne de l\u2019Amyloidosis Alliance rend hommage aux h\u00e9ros de l\u2019ombre\u00a0: les aidants. \u00c0 travers des r\u00e9cits \u00e9mouvants et des t\u00e9moignages sinc\u00e8res, elle montre le r\u00f4le pr\u00e9cieux des aidants dans la vie des patients atteints d\u2019amylose. Des soins physiques au soutien moral sans faille, les aidants sont des piliers qui permettent aux patients de traverser leur parcours avec dignit\u00e9 et r\u00e9silience.<\/p>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Caregiver video - English - EN SUB \ud83c\uddfa\ud83c\uddf8\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/cug6VO61E6U?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<div style=\"height:69px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p class=\"wp-block-paragraph\"><strong>Unis dans la raret\u00e9\u00a0: patients et organisations de patients<\/strong><br\/>Dans une autre vid\u00e9o marquante, l\u2019Alliance souligne l\u2019importance de l\u2019union entre patients et organisations de patients dans le domaine des maladies rares. En montrant des actions communes et des exp\u00e9riences partag\u00e9es, cette vid\u00e9o met en avant la force de la solidarit\u00e9 pour plaider en faveur de meilleurs traitements, d\u2019une meilleure connaissance de la maladie et d\u2019une meilleure qualit\u00e9 de vie pour les patients atteints d\u2019amylose dans le monde entier. Elle est une source d\u2019espoir, qui rassemble les voix et renforce le sentiment de communaut\u00e9 dans l\u2019univers des maladies rares.<\/p>\n\n<div style=\"height:16px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Julian Gillmore-English-EN Subtitles\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/Bw6My1ZC4e0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<div style=\"height:54px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p class=\"wp-block-paragraph\"><strong>Merci aux experts de l\u2019amylose\u00a0: un hommage mondial<\/strong><br\/>Le troisi\u00e8me volet de la campagne est un hommage sinc\u00e8re aux experts de l\u2019amylose du monde entier. Avec une profonde gratitude, l\u2019Alliance salue l\u2019engagement et le d\u00e9vouement sans faille de ces experts qui font progresser la recherche, offrent des soins sp\u00e9cialis\u00e9s et encouragent l\u2019innovation dans le domaine de l\u2019amylose. Cette vid\u00e9o rappelle avec force l\u2019impact profond de l\u2019expertise et de la collaboration sur la vie des patients et de leurs familles.<\/p>\n\n<div style=\"height:9px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Violaine Plante\u0301 - Amyloidosis- English - EN sub \ud83c\uddfa\ud83c\uddf8\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/J0_n65cuu5E?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<div style=\"height:44px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p class=\"wp-block-paragraph\"><strong>L\u2019innovation dans l\u2019amylose\u00a0: une nouvelle \u00e8re<\/strong><br\/>Face aux d\u00e9fis de l\u2019amylose, une lueur d\u2019espoir brille\u00a0: la promesse de l\u2019innovation. La quatri\u00e8me vid\u00e9o de la campagne explore cette p\u00e9riode d\u2019innovation importante, en mettant en avant les traitements novateurs, les projets de recherche de pointe et les nouvelles approches th\u00e9rapeutiques. Elle c\u00e9l\u00e8bre les progr\u00e8s r\u00e9alis\u00e9s dans la compr\u00e9hension et la prise en charge de l\u2019amylose, qui ouvrent une nouvelle \u00e8re d\u2019optimisme et de possibilit\u00e9s pour les patients et leurs proches.<\/p>\n\n<div style=\"height:11px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Interview THIBAUD DAMY - French professor in Amyloidosis - ENG SUB\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/15Q6ATesksE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<p class=\"wp-block-paragraph\"><br\/><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-luminous-vivid-orange-color\"><a href=\"http:\/\/rarediseaseday.org\">\u00c0 l\u2019approche de la Journ\u00e9e des maladies rares<\/a><\/mark>, la campagne vid\u00e9o de l\u2019Amyloidosis Alliance t\u00e9moigne avec force de la r\u00e9silience, de l\u2019unit\u00e9 et des progr\u00e8s de la communaut\u00e9 de l\u2019amylose. \u00c0 travers des t\u00e9moignages captivants de professionnels de la maladie, ces vid\u00e9os \u00e9clairent les multiples facettes de l\u2019amylose tout en saluant les efforts conjoints des aidants, des patients, des experts et des militants associatifs du monde entier.<\/p>\n\n<p class=\"wp-block-paragraph\">Ensemble, faisons entendre ces voix, sensibilisons et ouvrons la voie \u00e0 un avenir meilleur pour toutes les personnes touch\u00e9es par l\u2019amylose.<\/p>\n\n<div style=\"height:58px\" 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:225px;height:auto\"\/><\/figure>\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Pour la Journ\u00e9e des maladies rares 2024, l\u2019Amyloidosis Alliance lance une campagne vid\u00e9o sur l\u2019amylose, qui s\u2019ouvre sur un hommage aux aidants des patients.<\/p>\n","protected":false},"author":1,"featured_media":1658,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-1657","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 - 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