{"id":103494,"date":"2020-02-28T00:00:00","date_gmt":"2020-02-27T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/informar-se-bem-e-essencial-na-luta-contra-as-doencas-raras\/"},"modified":"2026-03-19T12:32:02","modified_gmt":"2026-03-19T11:32:02","slug":"informar-bem-essencial-na-luta-as-doencas-raras","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/pt\/informar-bem-essencial-na-luta-as-doencas-raras\/","title":{"rendered":"INFORMAR-SE BEM \u00c9 ESSENCIAL NA LUTA CONTRA AS DOEN\u00c7AS RARAS"},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Published by\u00a0<a title=\"Artigos de ICSEB\" href=\"https:\/\/institutchiaribcn.com\/pt\/author\/anoop\/\" rel=\"author\">ICSEB<\/a>\u00a0at 28 Fevereiro, 2020<\/p>\n<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>A respeito do<strong>\u00a0Dia Mundial das Doen\u00e7as Raras<\/strong>, celebrado no dia 29 de fevereiro, o Institut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB) chama a aten\u00e7\u00e3o para a import\u00e2ncia de um diagn\u00f3stico e de um tratamento corretos. Isto porque uma informa\u00e7\u00e3o errada pode levar o(a) paciente a tomar uma decis\u00e3o equivocada, o que implicaria em consequ\u00eancias muito graves para a sua sa\u00fade.<\/p>\n<p>Por isso, o ICSEB, a\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/en\/\">Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/a>\u00a0\u00a0e a\u00a0<a href=\"https:\/\/institutchiaribcn.com\/pt\/apresentacao-filum-academy-barcelona\/\">Filum Academy Barcelona<\/a>\u00a0\u00a0promovem a pesquisa, a doc\u00eancia e a divulga\u00e7\u00e3o dos conhecimentos sobre a\u00a0<a href=\"https:\/\/institutchiaribcn.com\/pt\/doencas-que-tratamos\/doenca-do-filum\/\"><strong>Doen\u00e7a do Filum<\/strong><\/a><strong>,\u00a0<\/strong>que inclui patologias atualmente consideradas raras.<\/p>\n<p>Entre estas patologias, se incluem a\u00a0<a href=\"https:\/\/institutchiaribcn.com\/pt\/doencas-que-tratamos\/sindrome-de-arnold-chiari-i\/\"><strong>S\u00edndrome de Arnold-Chiari I<\/strong><\/a>\u00a0e a\u00a0<a href=\"https:\/\/institutchiaribcn.com\/pt\/home\/siringomielia-3\/\"><strong>Siringomielia Idiop\u00e1tica<\/strong><\/a>, que compartilham uma mesma causa \u2013 a tra\u00e7\u00e3o da medula espinhal e de todo o sistema nervoso por um Filum terminale excessivamente tenso. Atualmente, ambas as patologias s\u00e3o tratadas com uma cirurgia minimamente invasiva, que evita complica\u00e7\u00f5es graves (ou, inclusive, a morte).<\/p>\n<p>Divulguemos informa\u00e7\u00f5es que salvam vidas. Neste 29 de fevereiro, e sempre, lutemos contra as Doen\u00e7as Raras!<\/p>\n","protected":false},"featured_media":103495,"template":"","tipos-de-comunicacion":[533],"class_list":["post-103494","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-comunicados"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Informar bem na luta contra doen\u00e7as raras | ICSEB<\/title>\n<meta name=\"description\" content=\"A respeito do Dia Mundial das Doen\u00e7as Raras, celebrado no dia 29 de fevereiro, o Institut Chiari &amp; Siringomielia &amp; Escoliosis... \u00a0 Ver mais \u2192\" \/>\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\/pt\/informar-bem-essencial-na-luta-as-doencas-raras\/\" \/>\n<meta property=\"og:locale\" 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