{"id":97723,"date":"2026-01-19T10:41:58","date_gmt":"2026-01-19T08:41:58","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=97723"},"modified":"2026-01-21T15:36:56","modified_gmt":"2026-01-21T13:36:56","slug":"journee-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference\/","title":{"rendered":"Journ\u00e9e Mondiale du Syndrome d&#8217;Alagille &#8211; L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence"},"content":{"rendered":"\n<p>\u00ab\u202fNous \u00e9tions sous le choc\u202f\u00bb \u2013 c\u2019est ce que C\u00e9line a ressenti lorsque sa famille a appris que sa fille Suzanne avait \u00e9t\u00e9 diagnostiqu\u00e9e avec une maladie rare du foie, le syndrome d\u2019Alagille (ALGS), alors qu\u2019elle n\u2019avait que quelques mois.<\/p>\n\n\n\n<p>Chez Ipsen, nous nous tenons aux c\u00f4t\u00e9s de l\u2019Alagille Syndrome Alliance le 24 janvier, Journ\u00e9e de sensibilisation \u00e0 l\u2019ALGS, et chaque jour. Nous comprenons l\u2019importance de soutenir les associations de patients dans leurs efforts pour sensibiliser \u00e0 ces maladies rares et complexes, afin que les familles sachent qu\u2019elles ne sont pas seules.<\/p>\n\n\n\n<p>\u00c9coutez Roberta Smith, Pr\u00e9sidente de l\u2019Alagille Syndrome Alliance, qui partage ce qu\u2019elle aimerait que chacun sache sur l\u2019ALGS et l\u2019importance des journ\u00e9es de sensibilisation.<\/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=\"Roberta Smith full video\" src=\"https:\/\/player.vimeo.com\/video\/1155924282?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>L\u2019Alagille Syndrome Alliance \u0153uvre pour soutenir les familles \u00e0 travers le monde qui vivent avec un diagnostic d\u2019ALGS. L\u2019organisation vise \u00e0 rassembler des professionnels de la communaut\u00e9 ALGS, y compris des patients, des aidants et des proches, afin de mieux comprendre la nature complexe et difficile de l\u2019ALGS.<\/p>\n\n\n\n<p>Leur mission est de mobiliser des ressources, faciliter les connexions, promouvoir l\u2019unit\u00e9 et plaider pour un traitement afin d\u2019inspirer, d\u2019autonomiser et d\u2019am\u00e9liorer la vie des personnes touch\u00e9es par le syndrome d\u2019Alagille. <\/p>\n\n\n\n<p>Pour en savoir plus sur l\u2019ALGS \u00e0 travers le t\u00e9moignage d\u2019une famille vivant avec la maladie, \u00e9coutez l\u2019histoire de C\u00e9line et Suzanne ci-dessous.<\/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-Celine-Suzanne-20mbps_STANG\" src=\"https:\/\/player.vimeo.com\/video\/1084634011?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<!--Alert Card Layout Start Here-->\n<section class=\"alertcard-section\">\n      <div class=\"container\">\n        <!--Alert Box HTML Start Here-->\n        <div class=\"alert-box warning-box\">\n                  <div class=\"info-contents\">\n          <h4 role=\"heading\" aria-level=\"2\" class=\"info-head heading-four heading-four\">Ressources<\/h4>\n            <p class=\"info-sub-head-para hidden heading-para\"><\/p>\n            <div class=\"alert-content visible\"><ul>\n<li>Pour entendre certains des principaux experts en maladies rares du foie p\u00e9diatriques, \u00e9coutez l\u2019entretien entre le Professeur Bjorn Fischler, h\u00e9patologue p\u00e9diatrique, et Laure Dorey, Directrice de l\u2019association fran\u00e7aise de patients AMFE\u202f:<a href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/reconnaitre-les-signes-precocement-ameliorer-les-resultats-pour-les-enfants-atteints-de-maladies-rares-du-foie\/\">Recognizing the Signs Early: Improving Outcomes for Children with Rare Liver Diseases\u00a0 &#8211; Global<\/a><\/li>\n<li>Pour plus d\u2019informations et pour acc\u00e9der \u00e0 des ressources et un soutien pour les patients ALGS, leurs aidants, familles et amis, visitez le site de l\u2019Alagille Syndrome Alliance\u202f:<br \/>\n: <a href=\"https:\/\/alagille.org\/about-us\/\">Hope for ALGS: Support and Resources | Alagille Syndrome Alliance<\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<\/div>\n          <\/div>\n        <\/div>\n        <!--Alert Box HTML Start Here-->\n      <\/div>\n    <\/section>\n<!--Alert Card Layout End Here-->\n","protected":false},"excerpt":{"rendered":"<p>\u00ab\u202fNous \u00e9tions sous le choc\u202f\u00bb \u2013 c\u2019est ce que C\u00e9line a ressenti lorsque sa famille a appris que sa fille<\/p>\n","protected":false},"author":11,"featured_media":97721,"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-97723","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 Mondiale du Syndrome d&#039;Alagille - L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence - 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-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Journ\u00e9e Mondiale du Syndrome d&#039;Alagille - L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence - Global\" \/>\n<meta property=\"og:description\" content=\"\u00ab\u202fNous \u00e9tions sous le choc\u202f\u00bb \u2013 c\u2019est ce que C\u00e9line a ressenti lorsque sa famille a appris que sa fille\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference\/\" \/>\n<meta property=\"og:site_name\" content=\"Global\" \/>\n<meta property=\"article:published_time\" content=\"2026-01-19T08:41:58+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-01-21T13:36:56+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/01\/Image1-2.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"3638\" \/>\n\t<meta property=\"og:image:height\" content=\"2170\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"heloisedetouchet\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@ipsengroup\" \/>\n<meta name=\"twitter:site\" content=\"@ipsengroup\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"heloisedetouchet\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference\/\"},\"author\":{\"name\":\"heloisedetouchet\",\"@id\":\"https:\/\/www.ipsen.com\/fr\/#\/schema\/person\/2c275168b31beee81688f3c041877318\"},\"headline\":\"Journ\u00e9e Mondiale du Syndrome d&#8217;Alagille &#8211; 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