{"id":98810,"date":"2017-06-21T00:00:00","date_gmt":"2017-06-20T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/nowa-strona-internetowa-chiari-scoliosis-syringomyelia-foundation-jest-juz-dostepna\/"},"modified":"2026-02-23T10:01:41","modified_gmt":"2026-02-23T09:01:41","slug":"nowa-strona-internetowa-chiari-scoliosis-syringomyelia-foundation-juz-dostepna","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/pl\/nowa-strona-internetowa-chiari-scoliosis-syringomyelia-foundation-juz-dostepna\/","title":{"rendered":"Nowa strona internetowa Chiari &#038; Scoliosis &#038; Syringomyelia Foundation jest ju\u017c dost\u0119pna."},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Published by\u00a0<a title=\"Entradas de ICSEB\" href=\"https:\/\/institutchiaribcn.com\/pl\/author\/anoop\/\" rel=\"author\">ICSEB<\/a>\u00a0at 19 junio, 2017<\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/chiarifoundationbcn.com\/\" target=\"_blank\" rel=\"noopener\"><img decoding=\"async\" class=\"img-rounded img-responsive text-wrap alignright\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2017\/06\/Web-CSSf.jpg\" alt=\"Chiari Foundation Barcelona\" \/><\/a><\/p>\n<p>Instytut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB) ma przyjemno\u015b\u0107 zaprezentowa\u0107 Pa\u0144stwu now\u0105 stron\u0119 internetow\u0105\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/\" target=\"_blank\" rel=\"noopener\"><strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation (CSSf)<\/strong>.<\/a><\/p>\n<p>Ca\u0142kowicie odnowiona i z bardziej dynamicznym wzorem, strona web pozwala szybciej i pro\u015bciej przegl\u0105da\u0107 strony internetowe oraz u\u0142atwia dost\u0119p do ich tre\u015bci.<\/p>\n<p>Na g\u0142\u00f3wnej stronie znajduj\u0105 si\u0119 3 cele, kt\u00f3re definiuj\u0105 misj\u0119 Fundacji:\u00a0<strong>badania naukowe, nauczanie i pomoc socjalna<\/strong>\u00a0\u2013 przek\u0142adaj\u0105 si\u0119 one na wspieranie wszystkich os\u00f3b, spo\u0142ecze\u0144stwa b\u0105d\u017a inicjatyw, kt\u00f3re pomog\u0142yby pacjentom cierpi\u0105cym na Chorob\u0119 Filum, szanuj\u0105c ich warto\u015bci etyczne i naukowe.<\/p>\n<p>Mamy nadziej\u0119, \u017ce nowa strona internetowa pomo\u017ce pacjentom u kt\u00f3rych zdiagnozowano Syndrom Arnolda Chiari I, Idiopatyczn\u0105 jamisto\u015b\u0107 rdzenia i Skolioz\u0119 idiopatyczn\u0105 i wszystkie inne patologie powi\u0105zane z Chorob\u0105 Filum, zapraszamy Pa\u0144stwa do zapoznania si\u0119 z ni\u0105 i je\u017celi maj\u0105 Pa\u0144stwo takie \u017cyczenie, do wspierania naszej misji.<\/p>\n<hr \/>\n<h3>List prezesa Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/h3>\n<p>&nbsp;<\/p>\n<div class=\"col-md-4\" align=\"center\"><a href=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2017\/06\/DrRoyo.jpg\"><img fetchpriority=\"high\" decoding=\"async\" class=\"img-rounded img-responsive alignleft\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2017\/06\/DrRoyo.jpg\" alt=\"\" width=\"225\" height=\"300\" \/><\/a><\/div>\n<p>W po\u0142owie lat siedemdziesi\u0105tych rozpocz\u0105\u0142em drog\u0119 bada\u0144 naukowych, kt\u00f3ra pocz\u0105tkowo skoncentrowa\u0142a si\u0119 na przyczynie Idiopatycznej jamisto\u015bci rdzenia, nast\u0119pnie na Syndromie Arnolda-Chiari I, oraz p\u00f3\u017aniej na Skoliozie idiopatycznej. Doszed\u0142em do wniosku, \u017ce \u017ar\u00f3d\u0142em tych chor\u00f3b, oraz innych powi\u0105zanych, by\u0142a anormalna trakcja rdzenia kr\u0119gowego, spowodowana filum terminale, kt\u00f3re od urodzenia jest bardziej napi\u0119te ni\u017c zwykle.<\/p>\n<p>Z moj\u0105 prac\u0105 doktorsk\u0105 \u2013 Wk\u0142ad w etiologi\u0119 syringomielii \u2013 (1992), zbudowa\u0142em fundamenty teorii nowego leczenia tych chor\u00f3b, przeprowadzaj\u0105c sekcj\u0119 chirurgiczn\u0105 Filum Terminale. Rezultatem by\u0142o wypracowanie metody sanitarnej Filum System\u00ae, systemu protoko\u0142u przeznaczonego do diagnozowania i leczenia nowej choroby, Choroby Filum, kt\u00f3r\u0105 rozpowszechnia i stosuje Instytut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB).<\/p>\n<p>Choroba Filum istnieje od pocz\u0105tku ludzko\u015bci, jest obecna w\u015br\u00f3d du\u017cej cz\u0119\u015bci populacji na \u015bwiecie, staj\u0105c si\u0119 prawdopodobnie jedn\u0105 z najbardziej powszechnych chor\u00f3b, ale zarazem jedn\u0105 z najbardziej nieznanych przez chorych, zwa\u017cywszy, \u017ce nie docenia si\u0119 wi\u0119kszo\u015b\u0107 z jej objaw\u00f3w, b\u0105d\u017a uwa\u017ca si\u0119 je za ma\u0142o istotne, zar\u00f3wno ze strony pacjent\u00f3w, jak i s\u0142u\u017cby zdrowia.<\/p>\n<p>Po opisaniu Choroby Filum i jej sposob\u00f3w leczenia, zada\u0142em sobie pytanie: Czemu s\u0142u\u017cy\u0142 wysi\u0142ek, aby odkry\u0107 now\u0105 chorob\u0119 i jej leczenie, je\u015bli mia\u0142aby tylko pozosta\u0107 ciekawostk\u0105 naukow\u0105 pracy doktorskiej b\u0105d\u017a ciekawostk\u0105 w czasopi\u015bmie medycznym?<\/p>\n<p>Musia\u0142em podj\u0105\u0107 nowe zadanie, polegaj\u0105ce na diagnozowaniu os\u00f3b z ca\u0142ego \u015bwiata, kt\u00f3re cierpi\u0105 na Chorob\u0119 Filum i da\u0107 im najlepsze leczenie.<\/p>\n<p>Co wi\u0119cej, pozosta\u0142y oczekuj\u0105ce badania naukowe, aby znale\u017a\u0107 inne wskaz\u00f3wki i inne sposoby leczenia; badania genetyczne, udoskonalenie technik chirurgicznych i nowych wytycznych neuro-rehabilitacji. R\u00f3wnie\u017c nale\u017ca\u0142o zachowa\u0107 si\u0142y, aby rozpowszechnia\u0107 na wszystkich poziomach: wiedz\u0119 naukow\u0105 i spo\u0142eczn\u0105. Nie zapominaj\u0105c o pomocy dla najbardziej potrzebuj\u0105cych chorych i ich otoczenia.<\/p>\n<p>Uzna\u0142em, \u017ce najlepszym instrumentem, aby osi\u0105gn\u0105\u0107 te cele by\u0142o za\u0142o\u017cenie\u00a0<strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation (CSSf)\u00a0<\/strong>w 2008 roku. Z jej wsparciem, ICSEB sta\u0142 si\u0119 pierwszym instytutem neurochirurgicznym z maksymaln\u0105 akredytacj\u0105 B+R, w 2014 roku przyczyni\u0142a si\u0119 do powstania Filum Academy Barcelona, gdzie zosta\u0142y przeprowadzone szkolenia medyczne i sanitarne na temat Choroby Filum, zupe\u0142nie bezp\u0142atne. CSSf wspar\u0142a i finansowa\u0142a spotkania pacjent\u00f3w i pracownik\u00f3w s\u0142u\u017cy zdrowia w czterech pa\u0144stwach europejskich. Pomog\u0142a i pokry\u0142a koszty leczenia pacjent\u00f3w bez \u015brodk\u00f3w finansowych, nie b\u0119d\u0105cych w stanie osi\u0105gn\u0105\u0107 ich na w\u0142asn\u0105 r\u0119k\u0119. Ustanowi\u0142a przejrzyst\u0105 i rzeteln\u0105 struktur\u0119 spo\u0142eczn\u0105 pod patronatem cz\u0142onk\u00f3w fundacji o najwy\u017cszym poziomie naukowym i ludzkim, chroni\u0105c z godno\u015bci\u0105\u00a0<strong>przestrzeganie 3 cel\u00f3w CSSf: badawczych, naukowych i pomocy spo\u0142ecznej.<\/strong><\/p>\n<p>Za po\u015brednictwem CSSf, mamy zamiar i\u015b\u0107 naprz\u00f3d z nasz\u0105 misj\u0105, mocno koncentruj\u0105c si\u0119 na dobru pacjenta i post\u0119pie naukowym.<\/p>\n<p>W zwi\u0105zku z tym, b\u0119dziemy wspiera\u0107 ka\u017cd\u0105 osob\u0119, spo\u0142ecze\u0144stwo b\u0105d\u017a inicjatyw\u0119, kt\u00f3ra pomog\u0142abym pacjentom cierpi\u0105cym na te choroby, pod warunkiem, \u017ce nie naruszy naszych warto\u015bci ludzkich, etycznych i naukowych.<\/p>\n<p><strong>Dr Miguel B. Royo Salvador<\/strong><br \/>\n<strong>Za\u0142o\u017cyciel i Prezes Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/strong><\/p>\n","protected":false},"featured_media":98811,"template":"","tipos-de-comunicacion":[530],"class_list":["post-98810","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-komunikaty"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nowa strona CSSf: Chiari, syringomielia i skolioza | ICSEB<\/title>\n<meta name=\"description\" content=\"Nowa strona Chiari, Scoliosis &amp; Syringomyelia Foundation ju\u017c dost\u0119pna. 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