{"id":84331,"date":"2020-02-28T00:00:00","date_gmt":"2020-02-27T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/informarsi-bene-per-sconfiggere-le-malattie-rare\/"},"modified":"2026-02-20T12:49:22","modified_gmt":"2026-02-20T11:49:22","slug":"informarsi-bene-sconfiggere-le-malattie-rare","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/it\/informarsi-bene-sconfiggere-le-malattie-rare\/","title":{"rendered":"INFORMARSI BENE PER SCONFIGGERE LE MALATTIE RARE"},"content":{"rendered":"<p><a href=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2020\/02\/rdd-icseb-2020.jpg\"><img fetchpriority=\"high\" decoding=\"async\" class=\"img-responsive text-wrap alignright\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2020\/02\/rdd-icseb-2020.jpg\" alt=\"\" width=\"400\" height=\"269\" \/><\/a><\/p>\n<p>Nell\u2019ambito della\u00a0<strong>Giornata Mondiale delle Malattie Rare<\/strong>\u00a0del prossimo\u00a0<strong>29 febbraio<\/strong>, l\u2019Institut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB) pone l\u2019accento sull\u2019importanza di una diagnosi e un trattamento corretti. Un\u2019informazione erronea pu\u00f2, infatti, portare il paziente a prendere la decisione sbagliata, comportando conseguenze molto gravi per la sua salute.<\/p>\n<p>Pertanto l\u2019ICSEB, unitamente alla\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/en\/\">Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/a>\u00a0e alla\u00a0<a href=\"https:\/\/institutchiaribcn.com\/it\/presentazione-filum-academy-barcelona\/\">Filum Academy Barcelona<\/a>, promuove la ricerca, la docenza e la divulgazione della conoscenza sulla\u00a0<a href=\"https:\/\/institutchiaribcn.com\/it\/patologie\/patologia-del-filum\/\"><strong>Malattia del Filum<\/strong><\/a>, che comprende patologie attualmente considerate rare.<\/p>\n<p>Tra queste patologie si includono la\u00a0<a href=\"https:\/\/institutchiaribcn.com\/it\/home\/sindrome-arnold-chiari\/\"><strong>Sindrome di Arnold-Chiari I\u00a0<\/strong><\/a>e la\u00a0<a href=\"https:\/\/institutchiaribcn.com\/it\/home\/siringomielia\/\"><strong>Siringomielia Idiopatica<\/strong><\/a>\u00a0, che condividono una medesima causa \u2013 la trazione anomala che un Filum Terminale eccessivamente teso esercita sul midollo spinale e tutto il sistema nervoso. Oggi per entrambe le malattie esiste un trattamento minimamente invasivo che permette di evitare complicazioni gravi (o incluso la morte).<\/p>\n<p>Diffondiamo informazioni che salvano vite. Il 29 febbraio, e il resto dell\u2019anno, lottiamo per sconfiggere le Malattie Rare!<\/p>\n","protected":false},"featured_media":84332,"template":"","tipos-de-comunicacion":[513],"class_list":["post-84331","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-notizie"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Informarsi bene per affrontare le malattie rare | ICSEB<\/title>\n<meta name=\"description\" content=\"L\u2019importanza di una corretta informazione per riconoscere e affrontare le malattie rare e migliorare diagnosi e trattamento.\" \/>\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\/it\/informarsi-bene-sconfiggere-le-malattie-rare\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta 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