{"id":783,"date":"2025-02-21T08:51:00","date_gmt":"2025-02-21T06:51:00","guid":{"rendered":"https:\/\/www.ipsen.com\/poland\/?p=783"},"modified":"2026-02-18T06:58:42","modified_gmt":"2026-02-18T04:58:42","slug":"ipsen-poland-sp-z-o-o-aktywnie-zaangazowany-w-obchody-swiatowego-dnia-zespolu-alagillea-2025","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/poland\/choroby-rzadkie\/ipsen-poland-sp-z-o-o-aktywnie-zaangazowany-w-obchody-swiatowego-dnia-zespolu-alagillea-2025\/","title":{"rendered":"Ipsen Poland Sp. z o.o. aktywnie zaanga\u017cowany w obchody \u015awiatowego Dnia Zespo\u0142u Alagille\u2019a 2025"},"content":{"rendered":"\n<p>Firma Ipsen Poland sp. z o.o. aktywnie zaanga\u017cowa\u0142a si\u0119 w tegoroczne obchody \u015awiatowego Dnia Zespo\u0142u Alagille\u2019a, przypadaj\u0105cego na dzie\u0144 24 stycznia.<\/p>\n\n\n\n<p>Byli\u015bmy partnerem nast\u0119puj\u0105cych aktywno\u015bci i wydarze\u0144:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Kampania \u201eZesp\u00f3\u0142 Alagille\u2019a: objawy, diagnostyka, leczenie\u201d w ramach Tematu Tygodnia WPROST<\/strong><\/li>\n<\/ul>\n\n\n\n<p>W ramach kampanii w mediach na portalu newsmed.pl opublikowane zosta\u0142y dwa materia\u0142y edukacyjne:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><a href=\"https:\/\/newsmed.pl\/medycyna\/choroby-rzadkie\/11913072\/zespol-alagillea-rzadka-choroba-watroby-uporczywy-swiad.html\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Zesp\u00f3\u0142 Alagille\u2019a: rzadka choroba w\u0105troby, uporczywy \u015bwi\u0105d<\/strong><\/a>\u00a0\u2013 informuj\u0105cy o objawach, diagnostyce i mo\u017cliwo\u015bciach leczenia<\/li>\n\n\n\n<li><a href=\"https:\/\/newsmed.pl\/medycyna\/choroby-rzadkie\/11913081\/zespol-alagillea-choruje-watroba-swedzi-cale-cialo.html\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Rodzice nie wiedz\u0105, co to przespana noc. \u201eNajwi\u0119ksz\u0105 zmor\u0105 jest \u015bwi\u0105d\u201d<\/strong><\/a>\u00a0\u2013 wywiad z ekspertem leczenia zespo\u0142u Alagille\u2019a<\/li>\n<\/ul>\n\n\n\n<p><em>\u201eNajwi\u0119ksz\u0105 zmor\u0105 pacjent\u00f3w i ich rodzin na co dzie\u0144 jest \u015bwi\u0105d. Trudno to sobie wyobrazi\u0107, je\u015bli tego si\u0119 nie zobaczy. To jest walka o to, \u017ceby by\u0142o jak najmniej blizn po zadrapaniach, \u017ceby dzieci nie drapa\u0142y si\u0119 w nocy. Rodzice nie pami\u0119taj\u0105, co to znaczy przespana noc, \u015bpi\u0105 z dzie\u0107mi po to, \u017ceby je od czasu do czasu lekko podrapa\u0107, \u017ceby one by\u0142y w stanie spa\u0107 i nie wybudza\u0142y si\u0119 z powodu \u015bwi\u0105du\u201d<\/em>\u00a0\u2013 podkre\u015bli\u0142 w wywiadzie prof. Piotr Czubkowski z Instytutu \u201ePomnik-Centrum Zdrowia Dziecka\u201d w Warszawie, zwracaj\u0105c szczeg\u00f3lna uwag\u0119 na diagnostyk\u0119 zespo\u0142u Alagille\u2019a i nowe mo\u017cliwo\u015bci leczenia \u015bwi\u0105du w przebiegu tej choroby.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Konferencja \u201eWyzwania na 2025\u201d, zorganizowana przez Puls Medycyny<\/strong><\/li>\n<\/ul>\n\n\n\n<p>W ramach konferencji 24 stycznia 2025 roku w Warszawie odby\u0142a si\u0119\u00a0<strong>debata \u201eChoroby rzadkie w Polsce \u2013 potrzebne systemowe rozwi\u0105zania\u201d<\/strong>. Wzi\u0119li w niej udzia\u0142 eksperci medyczni specjalizuj\u0105cy si\u0119 w diagnostyce i leczeniu chor\u00f3b rzadkich, przedstawiciele organizacji pacjent\u00f3w, a tak\u017ce Ministerstwa Zdrowia, Agencji Oceny Technologii Medycznych i Taryfikacji oraz Parlamentarnego Zespo\u0142u ds. Chor\u00f3b Rzadkich. Uczestnicy debaty rozmawiali o post\u0119pach we wdra\u017caniu Planu dla Chor\u00f3b Rzadkich na lata 2024-2025, potrzebnych zmianach systemowych oraz niezaspokojonych potrzebach pacjent\u00f3w z chorobami rzadkimi.<\/p>\n\n\n\n<p>Zach\u0119camy do zapoznania si\u0119 z pe\u0142n\u0105\u00a0<strong><a href=\"https:\/\/pulsmedycyny.pl\/medycyna\/choroby-rzadkie\/kazdego-roku-przybywa-w-polsce-rozwiazan-systemowych-w-obszarze-chorob\/\" target=\"_blank\" rel=\"noreferrer noopener\">relacj\u0105 z debaty<\/a><\/strong>.<\/p>\n\n\n\n<p>\u0179r\u00f3d\u0142o fot. Puls Medycyny<\/p>\n\n\n\n<p><strong>W obchody \u015awiatowego Dnia Zespo\u0142u Alagille\u2019a zaanga\u017cowali si\u0119 r\u00f3wnie\u017c cz\u0142onkowie zespo\u0142u Ipsen Poland, na czele z Dyrektorem Generalnym Arkadiuszem Budzi\u0144skim.<\/strong> <strong>#BeALGSAware<\/strong><\/p>\n\n\n\n<p>ALLSC-PL-000274<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Firma Ipsen Poland sp. z o.o. aktywnie zaanga\u017cowa\u0142a si\u0119 w tegoroczne obchody \u015awiatowego Dnia Zespo\u0142u Alagille\u2019a, przypadaj\u0105cego na dzie\u0144 24<\/p>\n","protected":false},"author":2,"featured_media":850,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[36],"tags":[],"class_list":["post-783","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-choroby-rzadkie","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO 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