{"id":5064,"date":"2025-07-09T11:30:25","date_gmt":"2025-07-09T09:30:25","guid":{"rendered":"https:\/\/community.ehc.eu\/uncategorized-hr\/britansko-drustvo-za-hemofiliju-predstavlja-vazno-izvjesce-o-zenama-s-poremecajima-krvarenja-u-parlamentu\/"},"modified":"2025-12-18T15:00:25","modified_gmt":"2025-12-18T14:00:25","slug":"britansko-drustvo-za-hemofiliju-predstavlja-vazno-izvjesce-o-zenama-s-poremecajima-krvarenja-u-parlamentu","status":"publish","type":"post","link":"https:\/\/community.ehc.eu\/hr\/uncategorized-hr\/britansko-drustvo-za-hemofiliju-predstavlja-vazno-izvjesce-o-zenama-s-poremecajima-krvarenja-u-parlamentu\/","title":{"rendered":"Britansko dru\u0161tvo za hemofiliju predstavlja va\u017eno izvje\u0161\u0107e o \u017eenama s poreme\u0107ajima krvarenja u Parlamentu"},"content":{"rendered":"\n<p>Po\u010detkom srpnja, <strong><a href=\"https:\/\/haemophilia.org.uk\/\" target=\"_blank\" rel=\"noreferrer noopener\">Dru\u0161tvo za hemofiliju<\/a><\/strong> , na\u0161a nacionalna organizacija \u010dlanica u Ujedinjenom Kraljevstvu, <strong>objavilo je revolucionarno izvje\u0161\u0107e u Parlamentu<\/strong> , okupljaju\u0107i zastupnike, zdravstvene djelatnike i zagovornike kako bi istaknuli kako zdravstvene slu\u017ebe u Ujedinjenom Kraljevstvu ne uspijevaju u skrbi za \u017eene i djevoj\u010dice s poreme\u0107ajima krvarenja.<\/p>\n\n<p>Na parlamentarnom otvaranju, \u010diji je doma\u0107in bio <strong>zastupnik Clive Efford<\/strong> 3. srpnja izme\u0111u 14 i 16 sati, a kojem je prisustvovalo otprilike 80 gostiju, predstavljen je <em><strong><a href=\"https:\/\/haemophilia.org.uk\/underserved-overlooked\/?fbclid=IwY2xjawLbMHpleHRuA2FlbQIxMABicmlkETFlR2tpMUZpZ1ZRb0lDRTRXAR7MRF4XSZqEME6dt08PNUounS80cb018x1-nf3Ud4TF7S04QgvpAmjW0hYvYw_aem_g_PlIQz2uqe-XLpI57K6dg\" target=\"_blank\" rel=\"noreferrer noopener\">dokument pod nazivom &#8220;Nedovoljno opskrbljene, zanemarene: Kako na\u0161i zdravstveni sustavi zakazuju za \u017eene i djevoj\u010dice s poreme\u0107ajem krvarenja&#8221;<\/a><\/strong><\/em> &#8211; kulminacija trogodi\u0161nje studije koja je ispitivala postoje\u0107a istra\u017eivanja i \u017eivotna iskustva vi\u0161e od 100 \u017eena i djevoj\u010dica s poreme\u0107ajima krvarenja.<\/p>\n\n<p>Doga\u0111aj je okupio \u010dlanove Donjeg doma i Doma lordova, zajedno sa zdravstvenim djelatnicima, farmaceutskim partnerima i \u010dlanicama \u017denskog odbora Dru\u0161tva za hemofiliju Ujedinjenog Kraljevstva. Skup je opisan kao &#8220;nevjerojatno dirljiv&#8221;, s inspirativnim pri\u010dama \u017eena koje \u017eive s poreme\u0107ajima krvarenja u sredi\u0161tu pozornosti. <\/p>\n\n<p>Izvje\u0161\u0107e donosi 19 preporuka koje bi mogle radikalno pobolj\u0161ati lije\u010denje i skrb diljem Ujedinjenog Kraljevstva. Pokretanje kampanje u parlamentu predstavlja po\u010detak odr\u017eive kampanje koju vodi Dru\u0161tvo za hemofiliju, a koja poziva na reformu, a pri\u010de, strast i odlu\u010dnost \u017eena koje su prisustvovale potaknut \u0107e razgovor. <\/p>\n\n<h4 class=\"wp-block-heading\">Izvje\u0161\u0107e otkriva \u0161okantne razlike u zdravstvenoj skrbi<\/h4>\n\n<p>Izvje\u0161\u0107e otkriva da, unato\u010d tome \u0161to \u017eene i djevoj\u010dice \u010dine vi\u0161e od polovice ljudi s registriranim poreme\u0107ajima krvarenja u Ujedinjenom Kraljevstvu, suo\u010davaju se sa zna\u010dajnim nedostacima u dijagnostici i lije\u010denju:<\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong>\u017dene u prosjeku dijagnosticiraju bolest 16 godina kasnije nego mu\u0161karci<\/strong><\/li>\n\n\n\n<li><strong>Do 50 000 \u017eena \u017eivi s nedijagnosticiranim poreme\u0107ajima krvarenja<\/strong> zbog manjkavih sustava testiranja i neispitivanja uobi\u010dajenih simptoma poput obilnih menstruacija, krvarenja iz nosa i modrica.<\/li>\n\n\n\n<li><strong>Samo 8 od 29 velikih centara za lije\u010denje hemofilije<\/strong> nudi specijalizirane ginekolo\u0161ke klinike.<\/li>\n\n\n\n<li><strong>Manje od polovice (41%) centara za sveobuhvatnu skrb<\/strong> ima namjenskog klini\u010dkog voditelja za \u017eene i djevoj\u010dice.<\/li>\n<\/ul>\n\n<p>Izvje\u0161\u0107e tako\u0111er isti\u010de da obilna menstrualna krvarenja, koja su dvostruko vjerojatnija kod \u017eena s poreme\u0107ajima krvarenja, \u010desto prolaze bez odgovaraju\u0107eg pra\u0107enja nedostatka \u017eeljeza, \u0161to potencijalno dovodi do anemije koja se mo\u017ee sprije\u010diti.<\/p>\n\n<p><strong>Kate Burt<\/strong> , glavna izvr\u0161na direktorica Dru\u0161tva za hemofiliju, izjavila je:  <\/p>\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p><em>NHS usluge za poreme\u0107aje krvarenja stvorene su za mu\u0161karce, a na\u0161e izvje\u0161\u0107e sugerira da ne funkcioniraju za \u017eene. Nedostatak istra\u017eivanja u kombinaciji sa zastarjelim klini\u010dkim i financijskim na\u010dinom razmi\u0161ljanja ko\u010di lije\u010denje i skrb \u017eena i djevoj\u010dica. <\/em><\/p>\n<\/blockquote>\n\n<p><strong>Dr. Nicola Curry<\/strong> , supredsjedateljica Radne skupine za djevojke i \u017eene s poreme\u0107ajima krvarenja pri Lije\u010dni\u010dkoj organizaciji Centra za hemofiliju Ujedinjenog Kraljevstva (UKHCDO), pozdravila je izvje\u0161\u0107e. Rekla je:   <\/p>\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p><em>Ovo je izuzetno va\u017ean rad koji isti\u010de suvremene potrebe djevoj\u010dica i \u017eena s poreme\u0107ajima krvarenja. Izvje\u0161\u0107e poma\u017ee u osvje\u0161tavanju raznolikih potreba na\u0161e skupine pacijenata i nudi va\u017ene detalje o tome kako mi, kao klini\u010dari, mo\u017eemo bolje razumjeti kako personalizirati skrb o pacijentima i prilagoditi na\u0161e usluge kako bi odra\u017eavale te potrebe u na\u0161im lokalnim bolnicama. Upravljanje izazovnim simptomima, poput obilnog menstrualnog krvarenja ili \u010destih modrica, mo\u017ee biti vrlo te\u0161ko i treba u\u010diniti vi\u0161e u podr\u0161ci djevoj\u010dicama i \u017eenama s poreme\u0107ajem krvarenja kako bi postigle bolju kvalitetu \u017eivota.  <\/em><\/p>\n<\/blockquote>\n\n<p><strong><a href=\"https:\/\/haemophilia.org.uk\/underserved-overlooked\/?fbclid=IwY2xjawLbMHpleHRuA2FlbQIxMABicmlkETFlR2tpMUZpZ1ZRb0lDRTRXAR7MRF4XSZqEME6dt08PNUounS80cb018x1-nf3Ud4TF7S04QgvpAmjW0hYvYw_aem_g_PlIQz2uqe-XLpI57K6dg\" target=\"_blank\" rel=\"noreferrer noopener\">Preuzmite izvje\u0161\u0107e OVDJE.<\/a><\/strong><\/p>\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"769\" data-id=\"3712\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516164008_1136499648512975_7369985607808749525_n-1024x769.jpg\" alt=\"\" class=\"wp-image-3712\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516164008_1136499648512975_7369985607808749525_n-1024x769.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516164008_1136499648512975_7369985607808749525_n-300x225.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516164008_1136499648512975_7369985607808749525_n-768x577.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516164008_1136499648512975_7369985607808749525_n-1536x1154.jpg 1536w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516164008_1136499648512975_7369985607808749525_n.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"769\" data-id=\"3706\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516604393_1136499665179640_7093064953652844035_n-1024x769.jpg\" alt=\"\" class=\"wp-image-3706\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516604393_1136499665179640_7093064953652844035_n-1024x769.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516604393_1136499665179640_7093064953652844035_n-300x225.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516604393_1136499665179640_7093064953652844035_n-768x577.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516604393_1136499665179640_7093064953652844035_n-1536x1154.jpg 1536w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516604393_1136499665179640_7093064953652844035_n.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"769\" data-id=\"3709\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n-1-1024x769.jpg\" alt=\"\" class=\"wp-image-3709\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n-1-1024x769.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n-1-300x225.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n-1-768x577.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n-1-1536x1154.jpg 1536w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n-1.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"769\" data-id=\"3703\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/517856480_1136500388512901_549764146116911409_n-1024x769.jpg\" alt=\"\" class=\"wp-image-3703\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/517856480_1136500388512901_549764146116911409_n-1024x769.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/517856480_1136500388512901_549764146116911409_n-300x225.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/517856480_1136500388512901_549764146116911409_n-768x577.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/517856480_1136500388512901_549764146116911409_n-1536x1154.jpg 1536w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/517856480_1136500388512901_549764146116911409_n.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Po\u010detkom srpnja, na\u0161a nacionalna organizacija \u010dlanica u Ujedinjenom Kraljevstvu objavila je revolucionarno izvje\u0161\u0107e sa zastupnicima, zdravstvenim djelatnicima i zagovornicima kako bi istaknula kako zdravstvene slu\u017ebe u Ujedinjenom Kraljevstvu ne uspijevaju u pru\u017eanju pomo\u0107i \u017eenama i djevoj\u010dicama s poreme\u0107ajima krvarenja.<\/p>\n","protected":false},"author":6,"featured_media":5065,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[145,126],"tags":[176,179,163,177,178],"class_list":["post-5064","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-svijest","category-uncategorized-hr","tag-britanska-nmo","tag-izvjesce","tag-nmo-i","tag-svjetski-poslovni-razvoj","tag-zene"],"acf":[],"jetpack_featured_media_url":"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/07\/516918425_1136499835179623_9166686618959372594_n.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5064","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/comments?post=5064"}],"version-history":[{"count":1,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5064\/revisions"}],"predecessor-version":[{"id":5070,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5064\/revisions\/5070"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/media\/5065"}],"wp:attachment":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/media?parent=5064"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/categories?post=5064"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/tags?post=5064"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}