{"id":75797,"date":"2025-03-01T08:55:51","date_gmt":"2025-03-01T06:55:51","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=75797"},"modified":"2025-03-01T08:55:57","modified_gmt":"2025-03-01T06:55:57","slug":"journee-des-maladies-rares-2025-imaginer-plus-pour-la-communaute-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-des-maladies-rares-2025-imaginer-plus-pour-la-communaute-des-maladies-rares\/","title":{"rendered":"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0"},"content":{"rendered":"\n<p>Vivre avec une maladie rare repr\u00e9sente un immense d\u00e9fi quotidien pour des millions de personnes dans le monde. Pour ces personnes et leurs familles, la r\u00e9silience est essentielle et l&#8217;espoir devient une bou\u00e9e de sauvetage. La Journ\u00e9e des maladies rares est l&#8217;occasion de rendre hommage \u00e0 leur courage, d&#8217;amplifier leur voix et de r\u00e9affirmer notre vision commune d&#8217;un avenir rempli d&#8217;opportunit\u00e9s au-del\u00e0 de ce que toute personne atteinte d&#8217;une maladie rare aurait pu imaginer.&nbsp;<\/p>\n\n\n\n<p>Cette ann\u00e9e, le th\u00e8me de la Journ\u00e9e des maladies rares, \u201cPlus que ce que vous pouvez imaginer\u201d, est un appel \u00e0 l&#8217;action pour les patients, les soignants, les d\u00e9fenseurs des malades, les professionnels de la sant\u00e9, les d\u00e9cideurs politiques et l&#8217;industrie. Il rappelle avec force ce qu&#8217;il est possible de faire lorsque nous travaillons ensemble pour transformer l&#8217;imagination en impact.&nbsp;<\/p>\n\n\n\n<p>Sous l&#8217;\u00e9gide d&#8217;EURORDIS et avec le soutien d&#8217;innombrables autres organisations, la Journ\u00e9e des maladies rares constitue une plateforme essentielle pour mettre en lumi\u00e8re la communaut\u00e9 des maladies rares tout en favorisant la prise de conscience et l&#8217;action collective. Leurs efforts nous rappellent l&#8217;importance de la collaboration, non seulement en cette journ\u00e9e, mais tout au long de l&#8217;ann\u00e9e.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Au c\u0153ur des activit\u00e9s de cette ann\u00e9e se trouve la vision collective de ce que nous pouvons accomplir lorsque nous sommes unis par un objectif commun. Les employ\u00e9s d&#8217;Ipsen, inspir\u00e9s par la r\u00e9silience et la d\u00e9termination des personnes atteintes de maladies rares, se sont r\u00e9unis pour partager leurs espoirs et leurs r\u00eaves pour la communaut\u00e9. Leurs points de vue refl\u00e8tent la conviction commune qu&#8217;imaginer davantage n&#8217;est pas un acte solitaire, mais une collaboration men\u00e9e par tous ceux qui veulent faire la diff\u00e9rence.&nbsp;&nbsp;<\/p>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"Ipsen_Rare Disease Day 2025_Hero Video_Final (1)\" src=\"https:\/\/player.vimeo.com\/video\/1061275570?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p>Les d\u00e9fis li\u00e9s \u00e0 la prise en charge des maladies rares restent consid\u00e9rables. Les diagnostics tardifs, les disparit\u00e9s d&#8217;acc\u00e8s et les obstacles au soutien continuent d&#8217;avoir un impact sur les patients du monde entier. Pour r\u00e9soudre ces probl\u00e8mes, il faut plus que de l&#8217;innovation ; il faut des partenariats, des actions de sensibilisation et une compr\u00e9hension approfondie des besoins de la communaut\u00e9. En travaillant aux c\u00f4t\u00e9s des patients, de leurs familles et des d\u00e9fenseurs des malades, nous nous effor\u00e7ons de faire en sorte que leurs voix fa\u00e7onnent l&#8217;avenir des soins pour les maladies rares.&nbsp;&nbsp;<\/p>\n\n\n\n<p>La Journ\u00e9e des maladies rares nous rappelle l&#8217;extraordinaire potentiel dont nous disposons pour faire la diff\u00e9rence. C&#8217;est l&#8217;occasion de nous concentrer non seulement sur ce qui est possible aujourd&#8217;hui, mais aussi sur ce que nous pouvons r\u00e9aliser demain. Ensemble, avec la communaut\u00e9 des maladies rares, nous pouvons imaginer et cr\u00e9er un avenir rempli de possibilit\u00e9s au-del\u00e0 de tout ce que nous pouvons imaginer actuellement.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Car c&#8217;est en imaginant davantage que nous pourrons accomplir davantage, non seulement pour quelques-uns, mais aussi pour tous ceux qui sont touch\u00e9s par les maladies rares.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Pour en savoir plus sur la Journ\u00e9e des maladies rares et d\u00e9couvrir des t\u00e9moignages de la communaut\u00e9, consultez le site <a href=\"https:\/\/www.rarediseaseday.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.rarediseaseday.org\/<\/a>.&nbsp;&nbsp;&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Vivre avec une maladie rare repr\u00e9sente un immense d\u00e9fi quotidien pour des millions de personnes dans le monde. Pour ces<\/p>\n","protected":false},"author":11,"featured_media":75763,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-75797","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0 - Global<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-des-maladies-rares-2025-imaginer-plus-pour-la-communaute-des-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0 - Global\" \/>\n<meta property=\"og:description\" content=\"Vivre avec une maladie rare repr\u00e9sente un immense d\u00e9fi quotidien pour des millions de personnes dans le monde. 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