{"id":97951,"date":"2023-02-28T00:00:00","date_gmt":"2023-02-27T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/miedzynarodowy-dzien-chorob-rzadkich-2023-r\/"},"modified":"2026-02-23T12:44:51","modified_gmt":"2026-02-23T11:44:51","slug":"miedzynarodowy-dzien-chorob-rzadkich-2023-r","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/pl\/miedzynarodowy-dzien-chorob-rzadkich-2023-r\/","title":{"rendered":"Mi\u0119dzynarodowy Dzie\u0144 Chor\u00f3b Rzadkich 2023 r."},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Published by\u00a0<a title=\"Entradas de ICSEB\" href=\"https:\/\/institutchiaribcn.com\/pl\/author\/chiari\/\" rel=\"author\">ICSEB<\/a>\u00a0at 28 febrero, 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><strong>28 lutego<\/strong>\u00a0obchodzony jest Mi\u0119dzynarodowy\u00a0<strong>Dzie\u0144 Chor\u00f3b Rzadkich<\/strong>. Co roku podkre\u015blamy, \u017ce wed\u0142ug naszych ekspert\u00f3w,\u00a0<strong>Syndrom Arnolda Chiari I i Syringomielia,<\/strong>\u00a0ze wzgl\u0119du na ich wyst\u0119powanie i liczb\u0119 pacjent\u00f3w w populacji, nie s\u0105 chorobami tak rzadkimi; s\u0105 jednak \u201codosobnione\u201d, gdy\u017c maj\u0105 inne cechy typowe dla tego rodzaju patologii.<\/p>\n<p><strong>Instytut Chiari &amp; Syringomielia &amp; Scoliosis w Barcelonie (ICSEB)<\/strong>\u00a0pod\u0105\u017ca za teori\u0105 trakcji ogonowej Dr Miguela B. Royo Salvadora; rozwa\u017caj\u0105c przyczyn\u0119 obni\u017cenia migda\u0142k\u00f3w m\u00f3\u017cd\u017cku poni\u017cej otw\u00f3r wielki podstawy czaszki w Syndromie Arnolda Chiari I i wyst\u0119powania jam wewn\u0105trzrdzeniowych w Syringomielii idiopatycznej, b\u0119d\u0105c\u0105 konsekwencj\u0105 anormalnej trakcji, bardziej napi\u0119tego ni\u017c zwykle wi\u0119zad\u0142a\u00a0<em>Filum terminale,\u00a0<\/em>w ca\u0142ym o\u015brodkowym uk\u0142adzie nerwowym.<\/p>\n<p>Nasz o\u015brodek oferuje swoim pacjentom metod\u0119\u00a0<strong>Filum System\u00ae<\/strong>, unikaln\u0105 i ekskluzywn\u0105 metod\u0119 diagnostyki i leczenia wspomnianych schorze\u0144, polegaj\u0105c\u0105 na wykonaniu ma\u0142oinwazyjnej interwencji chirurgicznej \u2013 Sekcji\u00a0<em>Filum Terminale,<\/em>\u00a0z doskona\u0142ymi rezultatami i bez powik\u0142a\u0144; dany zabieg zatrzymuje ewolucj\u0119 choroby i poprawia jako\u015b\u0107 \u017cycia pacjent\u00f3w; jest alternatyw\u0105 dla agresywnych konwencjonalnych interwencji, kt\u00f3re wi\u0105\u017c\u0105 si\u0119 z cz\u0119stymi i powa\u017cnymi powik\u0142aniami.<\/p>\n<p>W tym roku \u015awiatowy Dzie\u0144 Chor\u00f3b Rzadkich koncentruje si\u0119 na\u00a0<strong>R\u00f3wno\u015bci,<\/strong>\u00a0aby ka\u017cdy mia\u0142 r\u00f3wne szanse i dost\u0119p do opieki. Pacjenci z rzadkimi patologiami cz\u0119\u015bciej do\u015bwiadczaj\u0105\u00a0<strong>nier\u00f3wno\u015bci, b\u0142\u0119dnej diagnozy i braku odpowiednich us\u0142ug w swoim \u015brodowisku.<\/strong><\/p>\n<p>Nasz o\u015brodek\u00a0<strong>(ICSEB)<\/strong>\u00a0udzieli\u0142 pomocy pacjentom z 85 kraj\u00f3w na 5 kontynentach, z kt\u00f3rych ka\u017cdy ma inny system opieki zdrowotnej, a w niekt\u00f3rych brakuje publicznej s\u0142u\u017cby zdrowia.<\/p>\n<p>Od 1993 roku w ICSEB zoperowano ponad 2200 pacjent\u00f3w metod\u0105\u00a0<strong>Filum System\u00ae,<\/strong>\u00a0uzyskuj\u0105c doskona\u0142e wyniki i subiektywny wska\u017anik zadowolenia na poziomie 93%. Niekt\u00f3rzy nasi pacjenci otrzymali pomoc pieni\u0119\u017cn\u0105 od swoich krajowych system\u00f3w opieki zdrowotnej, inni za\u015b otrzymali wsparcie od r\u00f3\u017cnych Fundacji, w tym tak\u017ce naszej-\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/\"><strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/strong><\/a>\u00a0\u2013 wi\u0119kszo\u015b\u0107 jednak pokry\u0142a koszty z w\u0142asnych \u015brodk\u00f3w.<\/p>\n<p>Na stronie Fundacji\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/\">Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/a>\u00a0mo\u017cna znale\u017a\u0107 wszelkie niezb\u0119dne informacje, a tak\u017ce mie\u0107 mo\u017cliwo\u015b\u0107 przyczynienia si\u0119 do wsparcia spo\u0142ecznego pacjent\u00f3w z Chorob\u0105 Filum:\u00a0<a href=\"https:\/\/chiarifoundationbcn.com\/donar\/\">https:\/\/chiarifoundationbcn.com\/donar\/<\/a>\u00a0.<\/p>\n<p><strong><em>#<\/em><\/strong><strong>Mi\u0119dzynarodowyDzie\u0144Chor\u00f3bRzadkich<\/strong><br \/>\n<strong><em>#ChorobyRzadkie<\/em><\/strong>.<\/p>\n","protected":false},"featured_media":97952,"template":"","tipos-de-comunicacion":[530],"class_list":["post-97951","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-komunikaty"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Mi\u0119dzynarodowy Dzie\u0144 Chor\u00f3b Rzadkich 2023 | ICSEB<\/title>\n<meta name=\"description\" content=\"ICSEB obchodzi Mi\u0119dzynarodowy Dzie\u0144 Chor\u00f3b Rzadkich 2023, podkre\u015blaj\u0105c rol\u0119 diagnostyki i wsparcia pacjent\u00f3w z chorobami neurologicznymi.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, 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