{"id":78352,"date":"2023-02-28T00:00:00","date_gmt":"2023-02-27T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/journee-internationale-des-maladies-rares-2023\/"},"modified":"2026-02-25T09:46:25","modified_gmt":"2026-02-25T08:46:25","slug":"journee-internationale-des-maladies-rares-2023","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/fr\/journee-internationale-des-maladies-rares-2023\/","title":{"rendered":"Journ\u00e9e internationale des maladies rares 2023"},"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 28 f\u00e9vrier, 2023<\/p>\n<p style=\"text-align: justify;\">A l\u2019occasion de la date du <strong>28 f\u00e9vrier; Journ\u00e9e internationale des maladies rares<\/strong>, nous soulignons chaque ann\u00e9e que, pour nos experts, le <strong>Syndrome d\u2019Arnold-Chiari I et la Syringomy\u00e9lie<\/strong> \u00a0ne sont pas si rares, en raison de leur incidence et du nombre de patients dans la population\u00a0; bien qu\u2019elles soient \u00ab\u00a0orphelines\u00a0\u00bb car elles pr\u00e9sentent d\u2019autres caract\u00e9ristiques typiques de ce type de pathologie.<\/p>\n<p>L\u2019 <strong>Institut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB) <\/strong>suit la th\u00e9orie de la traction caudale du Dr. Miguel B. Royo Salvador\u00a0; en consid\u00e9rant la cause de la descente des amygdales par dessous le foramen magnum dans le Syndrome d\u2019Arnold-Chiari I et des cavit\u00e9s intram\u00e9dullaires dans la Syringomy\u00e9lie idiopathique, cons\u00e9quence d\u2019une traction anormale sur ligament <em>filum terminale- <\/em>cong\u00e9nitalement plus tendue que la normalit\u00e9 sur l\u2019ensemble du syst\u00e8me nerveux central-.<\/p>\n<p>Notre centre propose la m\u00e9thode <strong>Filum System<\/strong><strong>\u00ae <\/strong>\u00e0 ses patients, une m\u00e9thode de diagnostic et de traitement unique et exclusive pour ces maladies, qui comprend la r\u00e9alisation d\u2019une intervention chirurgicale mini-invasive pour sectionner le <em>filum terminale<\/em> avec d\u2019excellents r\u00e9sultats et sans complications\u00a0; qui stoppe l\u2019\u00e9volution de la maladie et am\u00e9liore la qualit\u00e9 de vie des patients\u00a0; comme alternative aux interventions agressives pour ces diagnostics, avec des complications fr\u00e9quentes et graves.<\/p>\n<p>Cette ann\u00e9e, la Journ\u00e9e mondiale des maladies rares met l\u2019accent sur l\u2019<strong>\u00c9quit\u00e9<\/strong>, afin que chacun ait les m\u00eames opportunit\u00e9s et le m\u00eame acc\u00e8s aux soins de sant\u00e9. Parce que les patients atteints de pathologies rares sont plus susceptibles de conna\u00eetre des <strong>in\u00e9galit\u00e9s, des erreurs de diagnostic et le manque de services ad\u00e9quats dans leur environnement.<\/strong><\/p>\n<p>Notre centre <strong>(ICSEB)<\/strong> a aid\u00e9 des patients de 85 pays sur 5 continents, chacun avec des syst\u00e8mes de sant\u00e9 diff\u00e9rents et certains manquant de sant\u00e9 publique.<\/p>\n<p>Plus de 2.200 patients ont \u00e9t\u00e9 op\u00e9r\u00e9s \u00e0 l\u2019ICSEB avec la m\u00e9thode du <strong>Filum System<\/strong>\u00ae, depuis l\u2019ann\u00e9e 1993, avec d\u2019excellents r\u00e9sultats et un taux de satisfaction subjective d\u2019un 93%. Certains gr\u00e2ce au remboursement par leur syst\u00e8me de sant\u00e9 national, d\u2019autres avec l\u2019aide de fondations, dont la n\u00f4tre \u2013 la Fondation \u2013<strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation-, <\/strong>et la plupart avec leurs propres ressources.<\/p>\n<p>Sur le site de la <a href=\"https:\/\/chiarifoundationbcn.com\/\">Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/a> vous pouvez trouver toutes les informations et avoir la possibilit\u00e9 de collaborer \u00e0 l\u2019assistance sociale pour les patients atteints du Filum\u00a0: <a href=\"https:\/\/chiarifoundationbcn.com\/donar\/\">https:\/\/chiarifoundationbcn.com\/donar\/<\/a> .<\/p>\n<p><strong><em>#D\u00edaMundialdelasEnefermedadesRaras<\/em><\/strong><br \/>\n<strong><em>#EnfermedadesRaras<\/em><\/strong>.<\/p>\n","protected":false},"featured_media":78353,"template":"","tipos-de-comunicacion":[510],"class_list":["post-78352","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 internationale des maladies rares 2023 | ICSEB<\/title>\n<meta name=\"description\" content=\"ICSEB soutient la Journ\u00e9e des maladies rares 2023 : sensibilisation au Chiari, syringomy\u00e9lie, scoliose et soutien aux patients.\" \/>\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\/journee-internationale-des-maladies-rares-2023\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta 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