{"id":73260,"date":"2025-01-22T17:40:19","date_gmt":"2025-01-22T15:40:19","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=73260"},"modified":"2025-01-22T17:40:14","modified_gmt":"2025-01-22T15:40:14","slug":"ensemble-pour-la-journee-de-sensibilisation-au-syndrome-dalagille-sag","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/ensemble-pour-la-journee-de-sensibilisation-au-syndrome-dalagille-sag\/","title":{"rendered":"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)"},"content":{"rendered":"\n<p class=\"has-white-color has-text-color has-link-color wp-elements-7e4ac651328708ea719ac0894fa30934\">.<\/p>\n\n\n\n<p><em>Chaque ann\u00e9e, 1 enfant sur 30 000 pr\u00e9sente le syndrome d\u2019Alagille (SAG)<sup>1,2 <\/sup>\u00e0 la naissance. En janvier, nous nous joignons \u00e0 l\u2019Alagille Syndrome Alliance pour contribuer \u00e0 la sensibilisation de cette maladie h\u00e9patique cholestatique rare, et \u00e0 \u00eatre #ALGSAware (au courant du SAG).<\/em><em><\/em><\/p>\n\n\n\n<p><em>\u00ab Les gens ne parlent pas assez de la pression \u00e9motionnelle que cette maladie exerce sur nous en tant que parents, mais aussi sur nos enfants. Nous devons non seulement nous pr\u00e9occuper des implications m\u00e9dicales, mais \u00e9galement surveiller de pr\u00e8s l\u2019impact \u00e9motionnel que le SAG peut avoir sur les enfants au fur et \u00e0 mesure qu\u2019ils grandissent. \u00bb<\/em> <em>\u2013 <\/em>Ashley, parent d\u2019enfants atteints du SAG.<\/p>\n\n\n\n<p>Le syndrome d\u2019Alagille (SAG) est une maladie rare g\u00e9n\u00e9ralement diagnostiqu\u00e9e au cours de la premi\u00e8re ann\u00e9e de vie, les sympt\u00f4mes apparaissant peu apr\u00e8s la naissance ou dans la petite enfance.<sup>1<\/sup> Bien qu\u2019elle puisse affecter plusieurs organes du corps, le foie est le plus souvent touch\u00e9, entra\u00eenant souvent des sympt\u00f4mes tels qu\u2019un jaunissement de la peau (jaunisse) qui ne dispara\u00eet pas en quelques semaines, des selles p\u00e2les et des d\u00e9mangeaisons constantes.<sup>1,3<\/sup><\/p>\n\n\n\n<p>Chez Ipsen, nous avons pour objectif de d\u00e9velopper des innovations th\u00e9rapeutiques qui, nous l\u2019esp\u00e9rons, apporteront des changements positifs, afin d\u2019am\u00e9liorer la vie et les perspectives des personnes affect\u00e9es par des maladies h\u00e9patiques cholestatiques rares, comme le SAG.<\/p>\n\n\n\n<p>Le SAG est caus\u00e9 par une mutation g\u00e9n\u00e9tique qui peut \u00eatre h\u00e9rit\u00e9e d\u2019un parent porteur d\u2019au moins une de ces mutations, ou peut survenir spontan\u00e9ment avant la naissance.<sup>1,4<\/sup><\/p>\n\n\n\n<p>Ces mutations perturbent la voie de signalisation qui joue un r\u00f4le majeur dans la formation de certains organes et tissus, dont le foie, o\u00f9 elles provoquent le d\u00e9veloppement d\u2019un nombre r\u00e9duit de voies biliaires, ce que l\u2019on appelle la paucit\u00e9 des voies biliaires. Cette r\u00e9duction des voies biliaires intrah\u00e9patiques diminue l\u2019acheminement de la bile, un liquide digestif, \u00e0 travers le foie vers les intestins, conduisant \u00e0 une accumulation d\u2019acides biliaires, ce qui peut entra\u00eener des cicatrices h\u00e9patiques si elle n\u2019est pas prise en charge de mani\u00e8re efficace.<sup>3<\/sup><\/p>\n\n\n\n<p><em>\u00ab Le syndrome d\u2019Alagille dans notre vie signifie que nous devons faire face \u00e0 de nouvelles difficult\u00e9s chaque jour. Pour notre famille, le fait de rencontrer<\/em> <em>d\u2019autres personnes et de partager des exp\u00e9riences de vie avec elles au sein de cette communaut\u00e9 nous donne, ainsi qu\u2019aux autres, un sentiment d\u2019espoir et de soutien.&nbsp;\u00bb<\/em> <em>\u2013 Eli et Joy, <\/em><em>parents d\u2019un enfant atteint du SAG.<\/em><\/p>\n\n\n\n<p>Pour de nombreuses maladies du foie, dont plus de 100 sont connues<sup>5<\/sup>, le parcours vers le diagnostic peut souvent \u00eatre long et difficile en raison du manque de connaissance de la maladie et de la nature non sp\u00e9cifique de nombreux sympt\u00f4mes visibles, comme une fatigue invalidante ou des d\u00e9mangeaisons incessantes. Les troubles \u00e9motionnels que vivent les parents lorsque leur ou leurs enfants sont touch\u00e9s par ces maladies sont p\u00e9nibles, et le parcours depuis la suspicion des sympt\u00f4mes jusqu\u2019au diagnostic, au traitement et \u00e0 la prise en charge continue des soins peut affecter toute la famille. Il est vraiment important de faire partie d\u2019une communaut\u00e9 qui partage des ressources, des exp\u00e9riences et des conseils, et la <strong>Alagille Syndrome Alliance (ALGSA)<\/strong> l\u2019a fait exceptionnellement bien.<\/p>\n\n\n\n<p>En travaillant de concert avec la communaut\u00e9, nous pouvons soutenir des actions visant \u00e0 sensibiliser \u00e0 la maladie, \u00e0 am\u00e9liorer le diagnostic et \u00e0 plaider en faveur de changements positifs qui am\u00e9liorent la vie et les perspectives des personnes affect\u00e9es. Nous sommes tr\u00e8s fiers de soutenir cette association de patients lors de la <strong>Journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG) (le 24 janvier)<\/strong> et chaque jour, pour contribuer \u00e0 sensibiliser \u00e0 cette maladie rare du foie et amplifier la voix du patient \/ de l\u2019aidant.<\/p>\n\n\n\n<p>Pour en savoir plus sur ALGSA et entendre d\u2019autres t\u00e9moignages de personnes affect\u00e9es par le SAG, visitez <a href=\"https:\/\/alagille.org\/get-involved\/family-stories\/\">https:\/\/alagille.org\/get-involved\/family-stories\/<\/a><\/p>\n\n\n\n<p class=\"has-white-color has-text-color has-link-color wp-elements-7e4ac651328708ea719ac0894fa30934\">.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"204\" height=\"282\" data-id=\"73250\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image2.png\" alt=\"\" class=\"wp-image-73250\" srcset=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image2.png 204w, https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image2-109x150.png 109w\" sizes=\"(max-width: 204px) 100vw, 204px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"459\" height=\"650\" data-id=\"73252\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image3.png\" alt=\"\" class=\"wp-image-73252\" srcset=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image3.png 459w, https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image3-212x300.png 212w, https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image3-106x150.png 106w\" sizes=\"(max-width: 459px) 100vw, 459px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"459\" height=\"650\" data-id=\"73249\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image4.png\" alt=\"\" class=\"wp-image-73249\" srcset=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image4.png 459w, https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image4-212x300.png 212w, https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185343\/Image4-106x150.png 106w\" sizes=\"(max-width: 459px) 100vw, 459px\" \/><\/figure>\n<\/figure>\n\n\n\n<p>.<\/p>\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 general-box\">\n                  <div class=\"info-contents\">\n            <p class=\"info-head hidden\"><\/p>\n            <p class=\"info-sub-head-para visible\">R\u00e9f\u00e9rences<\/p>\n            <div class=\"alert-content visible\"><ol>\n<li><em>National Organization for Rare Disorders. Rare Disease Database. Alagille Syndrome. Disponible sur : <a href=\"https:\/\/rarediseases.org\/rare-diseases\/alagille-syndrome\/\">https:\/\/rarediseases.org\/rare-diseases\/alagille-syndrome\/<\/a>. Consult\u00e9 en janvier 2025.<\/em><\/li>\n<li><em>Leonard, LD, et al. 2014. Clinical utility gene card for: Alagille syndrome (ALGS). Eur J Hum Genet. 22(3):435-435.<\/em><\/li>\n<li><em>Kamath, BM, et al. 2018. Systematic review: The Epidemiology, Natural History, and Burden of Alagille Syndrome. Front Pharmacol. 12(704586):2-10.<\/em><\/li>\n<li><em>National Institute of Diabetes and Digestive and Kidney Diseases. Definition &amp; Facts for Alagille Syndrome. Disponible sur : <a href=\"https:\/\/www.niddk.nih.gov\/health-information\/liver-disease\/alagille-syndrome\/definition-facts#:~:text=Alagille%20syndrome%20is%20a%20genetic,bile%20ducts%20inside%20the%20liver\">https:\/\/www.niddk.nih.gov\/health-information\/liver-disease\/alagille-syndrome\/definition-facts#:~:text=Alagille%20syndrome%20is%20a%20genetic,bile%20ducts%20inside%20the%20liver<\/a>. Consult\u00e9 en janvier 2025.<\/em><\/li>\n<li><em>American Liver Foundation. Rare Liver Diseases. Disponible sur : <a href=\"https:\/\/liverfoundation.org\/resource-center\/blog\/rare-liver-diseases\/\">https:\/\/liverfoundation.org\/resource-center\/blog\/rare-liver-diseases\/<\/a>. Consult\u00e9 en janvier 2025.<\/em><\/li>\n<\/ol>\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>. Chaque ann\u00e9e, 1 enfant sur 30 000 pr\u00e9sente le syndrome d\u2019Alagille (SAG)1,2 \u00e0 la naissance. En janvier, nous nous<\/p>\n","protected":false},"author":11,"featured_media":73256,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-73260","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 v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG) - 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\/rare-diseases-fr\/ensemble-pour-la-journee-de-sensibilisation-au-syndrome-dalagille-sag\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG) - Global\" \/>\n<meta property=\"og:description\" content=\". 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