{"id":81980,"date":"2020-02-28T00:00:00","date_gmt":"2020-02-27T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/be-well-informed-to-fight-against-rare-diseases\/"},"modified":"2026-01-26T13:09:58","modified_gmt":"2026-01-26T12:09:58","slug":"well-informed-fight-rare-diseases","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/en\/well-informed-fight-rare-diseases\/","title":{"rendered":"BE WELL-INFORMED TO FIGHT AGAINST RARE DISEASES"},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Published by\u00a0<a title=\"Posts by ICSEB\" href=\"https:\/\/institutchiaribcn.com\/en\/author\/anoop\/\" rel=\"author\">ICSEB<\/a>\u00a0at 28 February, 2020<\/p>\n<p>&nbsp;<\/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>In the context of the\u00a0<strong>Rare Disease Day<\/strong>\u00a0on<strong>\u00a029 February<\/strong>, the Institut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB) draws attention to the importance of a correct diagnosis and treatment. In fact, erroneous information can lead to taking the wrong decision, with possible serious consequences for the patient\u2019s health.<\/p>\n<p>Therefore the ICSEB, together with the\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/en\/\">Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/a>\u00a0and the\u00a0<a href=\"https:\/\/institutchiaribcn.com\/en\/presentation-filum-academy-barcelona\/\">Filum Academy Barcelona<\/a>, promotes research, training and dissemination of knowledge about the\u00a0<a href=\"https:\/\/institutchiaribcn.com\/en\/diseases-we-treat\/filum-disease\/\"><strong>Filum Disease<\/strong><\/a><strong>,\u00a0<\/strong>which includes conditions that are currently considered to be rare.<\/p>\n<p><a href=\"https:\/\/institutchiaribcn.com\/en\/diseases-we-treat\/arnold-chiari-syndrome\/\"><strong>Arnold-Chiari Syndrome type I<\/strong><\/a>\u00a0and\u00a0<a href=\"https:\/\/institutchiaribcn.com\/en\/diseases-we-treat\/syringomyelia\/\"><strong>Idiopathic<\/strong>\u00a0<strong>Syringomyelia<\/strong><\/a><em>\u00a0<\/em>are among these conditions and share the same root cause \u2013 the anomalous traction that an overly tense Filum Terminale exerts on the spinal cord and the entire nervous system. Today for both conditions there is a minimally invasive treatment that allows avoiding severe complications (or even death).<\/p>\n<p>Spreading information can save lives. This 29 February \u2013 and the rest of the year \u2013 fight against Rare Diseases!<\/p>\n","protected":false},"featured_media":81981,"template":"","tipos-de-comunicacion":[512],"class_list":["post-81980","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-news-announcement"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Be well-informed to fight against rare diseases | ICSEB<\/title>\n<meta name=\"description\" content=\"Resources and advice for patients and families to stay informed and engaged in rare disease advocacy and care.\" \/>\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\/en\/well-informed-fight-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" 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