{"id":81691,"date":"2023-02-28T00:00:00","date_gmt":"2023-02-27T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/world-rare-disease-day-2023\/"},"modified":"2026-01-26T08:45:55","modified_gmt":"2026-01-26T07:45:55","slug":"world-rare-disease-day-2023","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/","title":{"rendered":"World Rare Disease Day 2023"},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Published by\u00a0<a title=\"Posts by ICSEB\" href=\"https:\/\/institutchiaribcn.com\/en\/author\/chiari\/\" rel=\"author\">ICSEB<\/a>\u00a0at 28 February, 2023<\/p>\n<p>&nbsp;<\/p>\n<div align=\"center\"><img decoding=\"async\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2022\/02\/rare-disease-icseb-chiari-siringomielia-2023.jpg\" alt=\"\" width=\"200\" height=\"200\" \/><\/div>\n<p>On the occasion of\u00a0<strong>World Rare Disease Day<\/strong>,\u00a0<strong>28 February<\/strong>\u00a0each year, we emphasize that Arnold-Chiari syndrome I and syringomyelia are not uncommon to our experts because of their incidence and number in the population. However, they are \u201corphan\u201d because they have other typical features of this type of disease.<\/p>\n<p>The\u00a0<strong>Institut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB)<\/strong>\u00a0follows the Dr. Miguel B. Royo Salvador\u2019s\u00a0<em>theory of caudal traction<\/em>. This theory considers that what causes the cerebellar tonsils to descend Arnold-Chiari Syndrome type I and intramedullary cavities to develop in idiopathic syringomyelia, is a consequence of the abnormal traction of the\u00a0<em>Filum terminale<\/em>\u00a0ligament. This ligament is congenitally tenser than normal, affecting the entire central nervous system.<\/p>\n<p>Our center offers patients the\u00a0<strong>Filum System<sup>\u00ae<\/sup><\/strong>\u00a0approach, a unique and proprietary method of diagnosing and treating these diseases, which includes minimally invasive surgical intervention to section the\u00a0<em>filum terminale<\/em>\u00a0with excellent results and without complications, stopping the disease development and improving the Quality of Life of patients. It is an alternative to aggressive routine procedures for these diagnoses with frequent and serious complications.<\/p>\n<p>This year, the focus of International Rare Disease Day is on\u00a0<strong>equity,<\/strong>\u00a0to achieve that everyone has equal opportunities and access to care. Because rare disease patients are more likely to experience\u00a0<strong>inequality, misdiagnosis, and lack of adequate services in their environment.<\/strong><\/p>\n<p>Our center\u00a0<strong>(ICSEB)<\/strong>\u00a0has seen patients from 85 countries on 5 continents, each country has a different healthcare system, some of which do not\u00a0 have a public healthcare system.<\/p>\n<p>Since 1993, ICSEB has operated on more than 2,200 patients using the\u00a0<strong>Filum System<sup>\u00ae<\/sup><\/strong>\u00a0method with excellent results and a 93% subjective satisfaction rate. Some are reimbursed by their national health systems, others are supported by foundations, including our own \u2013 the\u00a0<strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/strong>\u00a0\u2013 and most relying on their own funds.<\/p>\n<p>On the website of the\u00a0<strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/strong>\u00a0you can find all the information and the opportunity to get involved in the social help of Filum patients: https:\/\/chiarifoundationbcn.com\/en\/donation-chiari-foundation\/<\/p>\n<p><strong><em>#WorldRareDiseaseDay<\/em><\/strong><br \/>\n<strong><em>#RareDiseases<\/em><\/strong><\/p>\n","protected":false},"featured_media":81692,"template":"","tipos-de-comunicacion":[512],"class_list":["post-81691","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 v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>World Rare Disease Day 2023 | ICSEB<\/title>\n<meta name=\"description\" content=\"Report on ICSEB\u2019s activities for World Rare Disease Day 2023, awareness materials and resources for affected families.\" \/>\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\/world-rare-disease-day-2023\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"World Rare Disease Day 2023 | ICSEB\" \/>\n<meta property=\"og:description\" content=\"Report on ICSEB\u2019s activities for World Rare Disease Day 2023, awareness materials and resources for affected families.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/\" \/>\n<meta property=\"og:site_name\" content=\"Institut Chiari\" \/>\n<meta property=\"article:modified_time\" content=\"2026-01-26T07:45:55+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.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=\"Est. reading time\" \/>\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\/en\/world-rare-disease-day-2023\/\",\"url\":\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/\",\"name\":\"World Rare Disease Day 2023 | ICSEB\",\"isPartOf\":{\"@id\":\"https:\/\/institutchiaribcn.com\/en\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg\",\"datePublished\":\"2023-02-27T23:00:00+00:00\",\"dateModified\":\"2026-01-26T07:45:55+00:00\",\"description\":\"Report on ICSEB\u2019s activities for World Rare Disease Day 2023, awareness materials and resources for affected families.\",\"breadcrumb\":{\"@id\":\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#primaryimage\",\"url\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg\",\"contentUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg\",\"width\":200,\"height\":200},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\/\/institutchiaribcn.com\/en\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Comunicaci\u00f3n\",\"item\":\"https:\/\/institutchiaribcn.com\/en\/comunicacion\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"World Rare Disease Day 2023\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/institutchiaribcn.com\/en\/#website\",\"url\":\"https:\/\/institutchiaribcn.com\/en\/\",\"name\":\"Institut Chiari de Barcelona\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/institutchiaribcn.com\/en\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/institutchiaribcn.com\/en\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/institutchiaribcn.com\/en\/#organization\",\"name\":\"Institut Chiari de Barcelona\",\"url\":\"https:\/\/institutchiaribcn.com\/en\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/institutchiaribcn.com\/en\/#\/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\/en\/#\/schema\/logo\/image\/\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"World Rare Disease Day 2023 | ICSEB","description":"Report on ICSEB\u2019s activities for World Rare Disease Day 2023, awareness materials and resources for affected families.","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\/en\/world-rare-disease-day-2023\/","og_locale":"en_US","og_type":"article","og_title":"World Rare Disease Day 2023 | ICSEB","og_description":"Report on ICSEB\u2019s activities for World Rare Disease Day 2023, awareness materials and resources for affected families.","og_url":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/","og_site_name":"Institut Chiari","article_modified_time":"2026-01-26T07:45:55+00:00","og_image":[{"width":200,"height":200,"url":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg","type":"image\/jpeg"}],"twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/","url":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/","name":"World Rare Disease Day 2023 | ICSEB","isPartOf":{"@id":"https:\/\/institutchiaribcn.com\/en\/#website"},"primaryImageOfPage":{"@id":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#primaryimage"},"image":{"@id":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#primaryimage"},"thumbnailUrl":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg","datePublished":"2023-02-27T23:00:00+00:00","dateModified":"2026-01-26T07:45:55+00:00","description":"Report on ICSEB\u2019s activities for World Rare Disease Day 2023, awareness materials and resources for affected families.","breadcrumb":{"@id":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/"]}]},{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#primaryimage","url":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg","contentUrl":"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/10\/rare-disease-icseb-chiari-siringomielia-2023-3.jpg","width":200,"height":200},{"@type":"BreadcrumbList","@id":"https:\/\/institutchiaribcn.com\/en\/world-rare-disease-day-2023\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/institutchiaribcn.com\/en\/"},{"@type":"ListItem","position":2,"name":"Comunicaci\u00f3n","item":"https:\/\/institutchiaribcn.com\/en\/comunicacion\/"},{"@type":"ListItem","position":3,"name":"World Rare Disease Day 2023"}]},{"@type":"WebSite","@id":"https:\/\/institutchiaribcn.com\/en\/#website","url":"https:\/\/institutchiaribcn.com\/en\/","name":"Institut Chiari de Barcelona","description":"","publisher":{"@id":"https:\/\/institutchiaribcn.com\/en\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/institutchiaribcn.com\/en\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":"Organization","@id":"https:\/\/institutchiaribcn.com\/en\/#organization","name":"Institut Chiari de Barcelona","url":"https:\/\/institutchiaribcn.com\/en\/","logo":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/institutchiaribcn.com\/en\/#\/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\/en\/#\/schema\/logo\/image\/"}}]}},"_links":{"self":[{"href":"https:\/\/institutchiaribcn.com\/en\/wp-json\/wp\/v2\/comunicacion\/81691","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/institutchiaribcn.com\/en\/wp-json\/wp\/v2\/comunicacion"}],"about":[{"href":"https:\/\/institutchiaribcn.com\/en\/wp-json\/wp\/v2\/types\/comunicacion"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/institutchiaribcn.com\/en\/wp-json\/wp\/v2\/media\/81692"}],"wp:attachment":[{"href":"https:\/\/institutchiaribcn.com\/en\/wp-json\/wp\/v2\/media?parent=81691"}],"wp:term":[{"taxonomy":"tipos-de-comunicacion","embeddable":true,"href":"https:\/\/institutchiaribcn.com\/en\/wp-json\/wp\/v2\/tipos-de-comunicacion?post=81691"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}