{"id":76130,"date":"2024-02-29T00:00:00","date_gmt":"2024-02-28T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/29-de-febrer-dia-internacional-de-les-malalties-minoritaries\/"},"modified":"2026-03-19T11:39:25","modified_gmt":"2026-03-19T10:39:25","slug":"29-febrer-dia-internacional-malalties-minoritaries","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/ca\/29-febrer-dia-internacional-malalties-minoritaries\/","title":{"rendered":"29 de Febrer: Dia internacional de les malalties minorit\u00e0ries"},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Publicat per\u00a0<a title=\"Entrades de ICSEB\" href=\"https:\/\/institutchiaribcn.com\/ca\/author\/chiari\/\" rel=\"author\">ICSEB<\/a>\u00a0el 29 febrer, 2024<\/p>\n<p>&nbsp;<\/p>\n<div align=\"center\"><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter size-full wp-image-9585 img-rounded img-responsive\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2024\/02\/rare-dieseae-day-institut-chiari-ban-2024.jpeg\" sizes=\"(max-width: 663px) 100vw, 663px\" srcset=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2024\/02\/rare-dieseae-day-institut-chiari-ban-2024.jpeg 663w, https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2024\/02\/rare-dieseae-day-institut-chiari-ban-2024-300x207.jpeg 300w\" alt=\"\" width=\"663\" height=\"457\" \/><\/div>\n<p>&nbsp;<\/p>\n<p>Les malalties minorit\u00e0ries o rares, malgrat el seu nom, afecten un nombre sorprenentment gran de persones a tot el m\u00f3n. Per\u00f2 una de les caracter\u00edstiques que les fa \u201crares\u201d, \u00e9s que no es coneix la seva causa.<\/p>\n<p>En medicina es considera que la majoria de les malalties rares tenen un origen gen\u00e8tic, cosa que significa que sorgeixen des de l\u2019embar\u00e0s o el naixement, fins i tot si els s\u00edmptomes no apareixen fins m\u00e9s endavant. Tamb\u00e9 algunes poden sorgir a causa de combinacions de factors gen\u00e8tics i ambientals. El diagn\u00f2stic primerenc \u00e9s molt important, ja que un retard pot comportar tractaments inadequats o complicacions addicionals. No obstant aix\u00f2, a causa de la seva raresa; s\u2019estudien i coneixen poc, i el cam\u00ed cap a un diagn\u00f2stic correcte i a les ter\u00e0pies correctes pot ser lent i llarg per a molts pacients i les seves fam\u00edlies.<\/p>\n<p>La\u00a0<strong>S\u00edndrome d\u2019Arnold Chiari 0 i I i la Siringomi\u00e8lia Idiop\u00e0tica<\/strong>\u00a0que ens concerneixen i tractem en el treball especialitzat del nostre Institut, no s\u00f3n una excepci\u00f3: efectivament poden apar\u00e8ixer des del naixement o m\u00e9s tard, desencadenant-se tota la simptomatologia a vegades despr\u00e9s d\u2019un traumatisme; motiu pel qual el cam\u00ed cap al diagn\u00f2stic i fins a trobar el tractament \u00e9s tortu\u00f3s, i sovint els malalts sofreixen un deteriorament durant la seva cerca.<\/p>\n<p>Gr\u00e0cies als estudis del Dr. Royo Salvador, ara sabem que la Malaltia del Filum \u00e9s l\u2019origen etiol\u00f2gic com\u00fa i cong\u00e8nit que causa les malalties esementades anteriorment; que es remunta a l\u2019\u00e8poca del desenvolupament embrionari i que pot afectar diversos membres d\u2019una mateixa fam\u00edlia.<\/p>\n<p>En el\u00a0<strong>dia internacional de les Malalties Minorit\u00e0ries de 2024<\/strong>, volem destacar que promoure la recerca i l\u2019estudi sobre la\u00a0<strong>Malaltia del Filum i la S\u00edndrome Neuro-crani-vertebral amb descens de les am\u00edgdales cerebel\u00b7loses i quists intramedul\u00b7lars<\/strong>, permet con\u00e8ixer i difondre cada vegada m\u00e9s el coneixement de la forma en qu\u00e8 el mecanisme de la tracci\u00f3 del Filum terminale afecta al Sistema Nervi\u00f3s en aquestes patologies, i conseq\u00fcentment, fa que el diagn\u00f2stic i els tractaments siguin primerencs i efica\u00e7os per a tots els pacients.<\/p>\n<p>Per a una millor qualitat de vida dels pacients de S\u00edndrome d\u2019Arnold Chiari I i Siringomi\u00e8lia Idiop\u00e0tica, dona suport a la recerca mitjan\u00e7ant una donaci\u00f3 a la\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/en\/\">Chiari &amp; Escoliosi &amp; Syringomyelia Foundation<\/a>, i el futur dels pacients ser\u00e0 cada vegada menys rar!.<\/p>\n","protected":false},"featured_media":76131,"template":"","tipos-de-comunicacion":[509],"class_list":["post-76130","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-noticies"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>29\u202fFebrer: Dia Internacional Malalties Minorit\u00e0ries | ICSEB<\/title>\n<meta name=\"description\" content=\"Les malalties minorit\u00e0ries o rares, malgrat el seu nom, afecten un nombre sorprenentment gran de persones a tot el m\u00f3n. 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