{"id":78232,"date":"2024-02-29T00:00:00","date_gmt":"2024-02-28T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/29-fevrier-journee-internationale-des-maladies-rares\/"},"modified":"2026-04-02T10:29:40","modified_gmt":"2026-04-02T08:29:40","slug":"29-fevrier-journee-internationale-des-maladies-rares","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/","title":{"rendered":"29 F\u00e9vrier: Journ\u00e9e internationale des maladies rares"},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Published by <a title=\"Articles par ICSEB\" href=\"https:\/\/institutchiaribcn.com\/fr\/author\/chiari\/\" rel=\"author\">ICSEB<\/a> at 29 f\u00e9vrier, 2024<\/p>\n<p style=\"text-align: justify;\">Les maladies rares, malgr\u00e9 leur nom, touchent un nombre \u00e9tonnamment \u00e9lev\u00e9 de personnes dans le monde. Mais l\u2019une des caract\u00e9ristiques qui les rend \u00ab rares \u00bb est que leur cause n\u2019est pas connue.<\/p>\n<p style=\"text-align: justify;\">En m\u00e9decine, la plupart des maladies rares sont consid\u00e9r\u00e9es comme ayant une origine g\u00e9n\u00e9tique, c\u2019est-\u00e0-dire qu\u2019elles surviennent d\u00e8s la grossesse ou l\u2019accouchement, m\u00eame si les sympt\u00f4mes n\u2019apparaissent que plus tard. Certains peuvent \u00e9galement survenir en raison de combinaisons de facteurs g\u00e9n\u00e9tiques et environnementaux. Un diagnostic pr\u00e9coce est tr\u00e8s important, car un retard peut entra\u00eener des traitements inad\u00e9quats ou des complications suppl\u00e9mentaires. Cependant, en raison de sa raret\u00e9\u00a0; elles sont peu \u00e9tudi\u00e9es et connues, et le chemin vers un diagnostic correct et les th\u00e9rapies appropri\u00e9es peut \u00eatre lent et long pour de nombreux patients et leurs familles.<\/p>\n<p style=\"text-align: justify;\">Le syndrome <strong>d\u2019Arnold Chiari 0 et I et la syringomy\u00e9lie idiopathique<\/strong>, qui nous concernent et que nous traitons dans le travail sp\u00e9cialis\u00e9 de notre Institut, ne font pas exception \u00e0 cet \u00e9gard : ils peuvent effectivement appara\u00eetre d\u00e8s la naissance ou plus tard, d\u00e9clenchant tous les sympt\u00f4mes parfois apr\u00e8s un traumatisme; par cons\u00e9quent, le chemin menant au diagnostic et m\u00eame \u00e0 la recherche d\u2019un traitement est tortueux, et les patients souffrent souvent d\u2019une d\u00e9t\u00e9rioration au cours de leur recherche.<\/p>\n<p style=\"text-align: justify;\">Gr\u00e2ce aux \u00e9tudes du Dr. Royo Salvador, nous savons d\u00e9sormais que la Maladie du Filum est l\u2019origine \u00e9tiologique commune et cong\u00e9nitale \u00e0 l\u2019origine des maladies mentionn\u00e9es ci-dessus; qui remonte \u00e0 l\u2019\u00e9poque du d\u00e9veloppement embryonnaire et peut toucher plusieurs membres d\u2019une m\u00eame famille.<\/p>\n<p style=\"text-align: justify;\">\u00c0 l\u2019occasion de la <strong>Journ\u00e9e internationale des maladies rares de cette ann\u00e9e 2024<\/strong>, nous souhaitons souligner que promouvoir la recherche et l\u2019\u00e9tude sur la <strong>Maladie du Filum et le Syndrome Neuro-cr\u00e2nio-vert\u00e9bral avec descente des amygdales c\u00e9r\u00e9belleuses et des kystes intram\u00e9dullaires<\/strong>, nous permet de nous conna\u00eetre et de nous diffuser de plus en plus la connaissance de la mani\u00e8re dont le m\u00e9canisme de traction du Filum terminale affecte le syst\u00e8me nerveux dans ces pathologies et, par cons\u00e9quent, rend le diagnostic et les traitements pr\u00e9coces et efficaces pour tous les patients.<\/p>\n<p style=\"text-align: justify;\">Pour une meilleure qualit\u00e9 de vie des patients atteints du syndrome d\u2019Arnold Chiari I et de Syringomy\u00e9lie idiopathique, soutenez la recherche en faisant <strong><u>un don \u00e0 la Fondation Chiari &amp; Scoliosis &amp; Syringomyelya Foundation<\/u><\/strong> (<a href=\"https:\/\/chiarifoundationbcn.com\/en\/donation-chiari-foundation\/\">https:\/\/chiarifoundationbcn.com\/en\/donation-chiari-foundation\/<\/a>), et l\u2019avenir des patients moins \u00e9trange !<\/p>\n","protected":false},"featured_media":78233,"template":"","tipos-de-comunicacion":[510],"class_list":["post-78232","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-nouvelles"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e maladies rares 2024 | Instituto Chiari Barcelona<\/title>\n<meta name=\"description\" content=\"Journ\u00e9e internationale des maladies rares\u202f: sensibilisation aux troubles comme Chiari, syringomy\u00e9lie et scoliose.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-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 maladies rares 2024 | Instituto Chiari Barcelona\" \/>\n<meta property=\"og:description\" content=\"Journ\u00e9e internationale des maladies rares\u202f: sensibilisation aux troubles comme Chiari, syringomy\u00e9lie et scoliose.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"Institut Chiari\" \/>\n<meta property=\"article:modified_time\" content=\"2026-04-02T08:29:40+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"200\" \/>\n\t<meta property=\"og:image:height\" content=\"200\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/\",\"url\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/\",\"name\":\"Journ\u00e9e maladies rares 2024 | Instituto Chiari Barcelona\",\"isPartOf\":{\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg\",\"datePublished\":\"2024-02-28T23:00:00+00:00\",\"dateModified\":\"2026-04-02T08:29:40+00:00\",\"description\":\"Journ\u00e9e internationale des maladies rares\u202f: sensibilisation aux troubles comme Chiari, syringomy\u00e9lie et scoliose.\",\"breadcrumb\":{\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#primaryimage\",\"url\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg\",\"contentUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg\",\"width\":200,\"height\":200},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\/\/institutchiaribcn.com\/fr\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Comunicaci\u00f3n\",\"item\":\"https:\/\/institutchiaribcn.com\/fr\/comunicacion\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"29 F\u00e9vrier: Journ\u00e9e internationale des maladies rares\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/#website\",\"url\":\"https:\/\/institutchiaribcn.com\/fr\/\",\"name\":\"Institut Chiari de Barcelona\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/institutchiaribcn.com\/fr\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/#organization\",\"name\":\"Institut Chiari de Barcelona\",\"url\":\"https:\/\/institutchiaribcn.com\/fr\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/cropped-cropped-icsebNavLogo-1.png\",\"contentUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/cropped-cropped-icsebNavLogo-1.png\",\"width\":245,\"height\":99,\"caption\":\"Institut Chiari de Barcelona\"},\"image\":{\"@id\":\"https:\/\/institutchiaribcn.com\/fr\/#\/schema\/logo\/image\/\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Journ\u00e9e maladies rares 2024 | Instituto Chiari Barcelona","description":"Journ\u00e9e internationale des maladies rares\u202f: sensibilisation aux troubles comme Chiari, syringomy\u00e9lie et scoliose.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/","og_locale":"fr_FR","og_type":"article","og_title":"Journ\u00e9e maladies rares 2024 | Instituto Chiari Barcelona","og_description":"Journ\u00e9e internationale des maladies rares\u202f: sensibilisation aux troubles comme Chiari, syringomy\u00e9lie et scoliose.","og_url":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/","og_site_name":"Institut Chiari","article_modified_time":"2026-04-02T08:29:40+00:00","og_image":[{"width":200,"height":200,"url":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg","type":"image\/jpeg"}],"twitter_card":"summary_large_image","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/","url":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/","name":"Journ\u00e9e maladies rares 2024 | Instituto Chiari Barcelona","isPartOf":{"@id":"https:\/\/institutchiaribcn.com\/fr\/#website"},"primaryImageOfPage":{"@id":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#primaryimage"},"image":{"@id":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#primaryimage"},"thumbnailUrl":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg","datePublished":"2024-02-28T23:00:00+00:00","dateModified":"2026-04-02T08:29:40+00:00","description":"Journ\u00e9e internationale des maladies rares\u202f: sensibilisation aux troubles comme Chiari, syringomy\u00e9lie et scoliose.","breadcrumb":{"@id":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#primaryimage","url":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg","contentUrl":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/chiari-syrinomyelia-rare-disease-barcelona-1.jpg","width":200,"height":200},{"@type":"BreadcrumbList","@id":"https:\/\/institutchiaribcn.com\/fr\/29-fevrier-journee-internationale-des-maladies-rares\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/institutchiaribcn.com\/fr\/"},{"@type":"ListItem","position":2,"name":"Comunicaci\u00f3n","item":"https:\/\/institutchiaribcn.com\/fr\/comunicacion\/"},{"@type":"ListItem","position":3,"name":"29 F\u00e9vrier: Journ\u00e9e internationale des maladies rares"}]},{"@type":"WebSite","@id":"https:\/\/institutchiaribcn.com\/fr\/#website","url":"https:\/\/institutchiaribcn.com\/fr\/","name":"Institut Chiari de Barcelona","description":"","publisher":{"@id":"https:\/\/institutchiaribcn.com\/fr\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/institutchiaribcn.com\/fr\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/institutchiaribcn.com\/fr\/#organization","name":"Institut Chiari de Barcelona","url":"https:\/\/institutchiaribcn.com\/fr\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/institutchiaribcn.com\/fr\/#\/schema\/logo\/image\/","url":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/cropped-cropped-icsebNavLogo-1.png","contentUrl":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/cropped-cropped-icsebNavLogo-1.png","width":245,"height":99,"caption":"Institut Chiari de Barcelona"},"image":{"@id":"https:\/\/institutchiaribcn.com\/fr\/#\/schema\/logo\/image\/"}}]}},"_links":{"self":[{"href":"https:\/\/institutchiaribcn.com\/fr\/wp-json\/wp\/v2\/comunicacion\/78232","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/institutchiaribcn.com\/fr\/wp-json\/wp\/v2\/comunicacion"}],"about":[{"href":"https:\/\/institutchiaribcn.com\/fr\/wp-json\/wp\/v2\/types\/comunicacion"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/institutchiaribcn.com\/fr\/wp-json\/wp\/v2\/media\/78233"}],"wp:attachment":[{"href":"https:\/\/institutchiaribcn.com\/fr\/wp-json\/wp\/v2\/media?parent=78232"}],"wp:term":[{"taxonomy":"tipos-de-comunicacion","embeddable":true,"href":"https:\/\/institutchiaribcn.com\/fr\/wp-json\/wp\/v2\/tipos-de-comunicacion?post=78232"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}