{"id":5704,"date":"2025-01-31T14:00:15","date_gmt":"2025-01-31T13:00:15","guid":{"rendered":"https:\/\/community.ehc.eu\/uncategorized-hr\/ehc-von-willebrand-dan-podizanja-svijesti-o-bolesti-2025-kako-uciniti-nevidljivo-vidljivim\/"},"modified":"2026-04-14T16:05:46","modified_gmt":"2026-04-14T14:05:46","slug":"ehc-von-willebrand-dan-podizanja-svijesti-o-bolesti-2025-kako-uciniti-nevidljivo-vidljivim","status":"publish","type":"post","link":"https:\/\/community.ehc.eu\/hr\/uncategorized-hr\/ehc-von-willebrand-dan-podizanja-svijesti-o-bolesti-2025-kako-uciniti-nevidljivo-vidljivim\/","title":{"rendered":"EHC Von Willebrand Dan podizanja svijesti o bolesti 2025: Kako u\u010diniti nevidljivo vidljivim"},"content":{"rendered":"\n<p>Tre\u0107u godinu zaredom, EHC vodi kampanju za <strong>Europski dan podizanja svijesti o Von Willebrandovoj bolesti (VWD) 1. velja\u010de<\/strong>, skre\u0107u\u0107i pozornost na izazove s kojima se suo\u010davaju pacijenti s VWD-om. Ovogodi\u0161nja tema je &#8220;U\u010diniti nevidljivo vidljivim&#8221;. <\/p>\n\n<p>VWD je nasljedni poreme\u0107aj zgru\u0161avanja koji poga\u0111a i mu\u0161karce i \u017eene \u2013 zapravo, naj\u010de\u0161\u0107i poreme\u0107aj zgru\u0161avanja koji poga\u0111a do 1% populacije. Unato\u010d tome, mnogi pacijenti suo\u010davaju se s izazovima u dobivanju ispravne dijagnoze, pristupu lije\u010denju i suo\u010davanju s do\u017eivotnom stigmom. Posebno <strong>\u017eene<\/strong>, koje \u010desto godinama ostaju nedijagnosticirane ili pogre\u0161no dijagnosticirane, unato\u010d \u010destim krvarenjem iz nosa, prekomjernim modricama, obilnom menstrualnom krvarenju i dugotrajnom krvarenju nakon ozljeda ili operacija, \u0161to sve mo\u017ee zna\u010dajno utjecati na svakodnevni \u017eivot.  <\/p>\n<!-- overview --><section  class=\"s-overlay-img s-padding bg-sivo-ekstraSvjetlo\">\n\t<div class=\"container\">\n\t\t<div class=\"row w-full lg:flex-row justify-between text-center lg:text-left gap-14 lg:gap-0 relative z-10\">\n\t\t\t\t\t\t<div class=\"w-full lg:py-10\">\n\t\t\t\t<div class=\"bg-white min-h-full py-12 px-10 lg:py-24 lg:pl-24 xl:pl-44 relative radius-20 z-10\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"content mt-8\" data-scroll data-fade-up>\n\t\t\t\t\t\t\t<p><!-- wp:paragraph --><\/p>\n<p>Kao dio ovogodi\u0161nje kampanje, EHC je objavio seriju od <strong>10 videozapisa<\/strong> koji su dio <strong><a href=\"https:\/\/eurobloodnet.eu\/education-2\/patients-organizations-health-professionals-educational-program\/topic-on-focus-von-willebrand-disease\/index\/?ok\" target=\"_blank\" rel=\"noreferrer noopener\">kontinuiranog online obrazovnog programa<\/a><\/strong> u suradnji s <strong>ERN-EuroBloodNetom<\/strong>, uklju\u010duju\u0107i webinare vo\u0111ene stru\u010dnjacima koji pokrivaju klju\u010dne aspekte VWD-a. Ovi videozapisi sadr\u017ee medicinske uvide, osobna iskustva i prakti\u010dne strategije koje poma\u017eu pacijentima i njegovateljima da se sna\u0111u u \u017eivotu s ovim stanjem. <\/p>\n<p><!-- \/wp:paragraph --> <!-- wp:paragraph --><\/p>\n<p>Prvih 10 webinara dostupno je na <strong><a href=\"https:\/\/youtube.com\/playlist?list=PL-oiIvBt-bQf83yVb2RY3IuwBi2A5h43s&amp;si=Qzi4K8pnvSvyWM8O\" target=\"_blank\" rel=\"noreferrer noopener\">YouTube kanalu @EHCTVChannel<\/a><\/strong> i namijenjeni su pacijentima, njegovateljima, zdravstvenim djelatnicima i svima koji \u017eele saznati vi\u0161e o VWD-u. Me\u0111u njima, nekoliko zanimljivih epizoda fokusira se na \u017eene s VWD-om. <\/p>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t                        <div class=\"bottom mt-12\" data-scroll data-fade-up>\n                            <a href=\"https:\/\/youtube.com\/playlist?list=PL-oiIvBt-bQf83yVb2RY3IuwBi2A5h43s&#038;si=Qzi4K8pnvSvyWM8O\" target=\"_prazan\" class=\"btn with-icon\">\n                                <span>Pogledajte na\u0161e VWD webinare ovdje<\/span>\n                            <\/a>\n                        <\/div>\n                    \t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/section>\n<p>Na ovaj va\u017ean dan okupljamo se kako bismo pove\u0107ali razumijevanje i pokazali solidarnost s onima pogo\u0111enima ovim rijetkim poreme\u0107ajem krvarenja.  <strong>Poti\u010demo sve da u\u010de vi\u0161e, dijele pri\u010de i educiraju druge o VWD-u.<\/strong>  Ve\u0107a svjesnost vodi do ranije dijagnoze, bolje skrbi i na kraju do bolje kvalitete \u017eivota pacijenata. Zajedno mo\u017eemo osigurati da osobe s VWD-om dobiju skrb, podr\u0161ku i priznanje koje zaslu\u017euju. <\/p>\n\n<p>Kao dio ove inicijative, \u010dlanovi <strong><a href=\"https:\/\/community.ehc.eu\/hr\/focus-area\/von-willebrandova-bolest-vwd\/\" target=\"_blank\" rel=\"noreferrer noopener\">Odbora za VWD<\/a><\/strong> \u017eele podijeliti svoja osobna iskustva i nade za budu\u0107nost. Njihovi glasovi klju\u010dni su za podizanje svijesti i ohrabrivanje onih koje VWD poga\u0111a. Radimo zajedno kako nijedan pacijent s VWD-om ne bi osje\u0107ao nevidljivost. \u2764\ufe0f   <\/p>\n\n<p><\/p>\n\n<div class=\"wp-block-jetpack-slideshow aligncenter\" data-effect=\"slide\"><div class=\"wp-block-jetpack-slideshow_container swiper-container\"><ul class=\"wp-block-jetpack-slideshow_swiper-wrapper swiper-wrapper\"><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-2597\" data-id=\"2597\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-1-Facebook-Post-1-1024x1024.jpg\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-1-Facebook-Post-1-1024x1024.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-1-Facebook-Post-1-300x300.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-1-Facebook-Post-1-150x150.jpg 150w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-1-Facebook-Post-1-768x768.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-1-Facebook-Post-1.jpg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-2600\" data-id=\"2600\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-2-Facebook-Post-1-1024x1024.jpg\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-2-Facebook-Post-1-1024x1024.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-2-Facebook-Post-1-300x300.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-2-Facebook-Post-1-150x150.jpg 150w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-2-Facebook-Post-1-768x768.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-2-Facebook-Post-1.jpg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-2603\" data-id=\"2603\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-3-Facebook-Post-1-1024x1024.jpg\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-3-Facebook-Post-1-1024x1024.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-3-Facebook-Post-1-300x300.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-3-Facebook-Post-1-150x150.jpg 150w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-3-Facebook-Post-1-768x768.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-3-Facebook-Post-1.jpg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-2609\" data-id=\"2609\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-4-Facebook-Post-1-1024x1024.jpg\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-4-Facebook-Post-1-1024x1024.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-4-Facebook-Post-1-300x300.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-4-Facebook-Post-1-150x150.jpg 150w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-4-Facebook-Post-1-768x768.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-4-Facebook-Post-1.jpg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-2606\" data-id=\"2606\" src=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-5-Facebook-Post-1-1024x1024.jpg\" srcset=\"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-5-Facebook-Post-1-1024x1024.jpg 1024w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-5-Facebook-Post-1-300x300.jpg 300w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-5-Facebook-Post-1-150x150.jpg 150w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-5-Facebook-Post-1-768x768.jpg 768w, https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Quote-5-Facebook-Post-1.jpg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/li><\/ul><a class=\"wp-block-jetpack-slideshow_button-prev swiper-button-prev swiper-button-white\" role=\"button\"><\/a><a class=\"wp-block-jetpack-slideshow_button-next swiper-button-next swiper-button-white\" role=\"button\"><\/a><a aria-label=\"Pause Slideshow\" class=\"wp-block-jetpack-slideshow_button-pause\" role=\"button\"><\/a><div class=\"wp-block-jetpack-slideshow_pagination swiper-pagination swiper-pagination-white\"><\/div><\/div><\/div>\n\n<p>\u201c<em>Odbor za VWD EHC-a zajedno radi na podizanju svijesti, izgradnji razumijevanja i podr\u0161ci onima pogo\u0111enima ovom bole\u0161\u0107u \u2014 na Dan VWD-a radimo na tome da osvijetlimo put onih koji \u017eive s VWD-om. Znanje osna\u017euje. Suosje\u0107anje povezuje.  <\/em>\u201d<\/p>\n\n<p><strong>Jo Traunter, supredsjedateljica VWD odbora EHC-a<\/strong><\/p>\n\n<p>&#8220;<em>\u017dene i djevojke s blagim ili umjerenim oblikom VWD-a rijetko dobivaju dugotrajnu profilaksu, \u0161to mo\u017ee dovesti do toga da ih dru\u0161tvo pogre\u0161no ozna\u010di kao \u017ertve obiteljskog nasilja jer lako razviju dugotrajne modrice po cijelom tijelu bez o\u010ditog razloga.&#8221;<\/em><\/p>\n\n<p><strong>Julia Rauscher, <\/strong><strong>supredsjednica VWD odbora EHC-a<\/strong><\/p>\n\n<p>\u201c<em>Kao mama dviju k\u0107eri s VWD-om, vidim utjecaj njihove obilne menstruacije, povezane nesigurnosti i mentalne borbe svaki mjesec. Kao mama i \u010dlanica EHC odbora za VWD, nadam se da \u0107emo zajedno mo\u0107i podi\u0107i sve ve\u0107u svijest o VWD-u i problemima specifi\u010dnim za \u017eene koji s njim mogu do\u0107i. <\/em>&#8220;<\/p>\n\n<p><strong>Cathy Verbraeken, \u010dlanica EHC VWD odbora<\/strong><\/p>\n\n<p>\u201c<em>\u017divjeti s rijetkom bole\u0161\u0107u poput VWD-a \u2014 \u010destom, ali rijetko \u010duvenom i shva\u0107enom \u2014 donosi jedinstvenu priliku. Mo\u017eemo pretvoriti svoje izazove u rje\u0161enja, olak\u0161ati \u017eivot drugima i inspirirati druge pacijente i njegovatelje da u\u010dine isto. Odbor za VWD EHC-a okuplja pacijente, roditelje i stru\u010dnjake kako bi podigli svijest, educirali razli\u010dite skupine i zagovarali promjene tamo gdje su najpotrebnije. Budite hrabri, budite hrabri \u2014 pridru\u017eite se VWD zajednici, kako u svojoj zemlji, tako i me\u0111unarodno!   <\/em>\u201d<\/p>\n\n<p><strong>Baiba Ziemele, \u010dlanica EHC VWD odbora<\/strong><\/p>\n\n<p>\u201c<em>Na ovaj dan zajednica za VWD zahtijeva rani pristup dijagnozi i jednak pristup lije\u010denju. Pomozite nam \u0161iriti poruku, doprijeti do vi\u0161e pacijenata i uklju\u010diti se u zajednicu. Pridru\u017eite nam se na Dan podizanja svijesti o VWD-u i dajte nam glas!  <\/em>&#8220;<\/p>\n\n<p><strong>Laura Quintas Lorenzo, \u010dlanica za vezu Upravnog odbora EHC-a u Odboru za VWD EHC-a<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Tre\u0107u godinu zaredom, EHC vodi kampanju za Europski dan podizanja svijesti o VWD 1. velja\u010de, skre\u0107u\u0107i pozornost na izazove s kojima se suo\u010davaju pacijenti s VWD-om. Ovogodi\u0161nja tema je &#8220;U\u010diniti nevidljivo vidljivim&#8221;. <\/p>\n","protected":false},"author":6,"featured_media":5705,"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":[218,219,209,208,146],"class_list":["post-5704","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-svijest","category-uncategorized-hr","tag-bevwdaware","tag-vwday","tag-vwdtogethere","tag-vwdunited","tag-vwd"],"acf":[],"jetpack_featured_media_url":"https:\/\/community.ehc.eu\/wp-content\/uploads\/2025\/01\/Main-visual-Blog-banner-1.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5704","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=5704"}],"version-history":[{"count":3,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5704\/revisions"}],"predecessor-version":[{"id":5790,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5704\/revisions\/5790"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/media\/5705"}],"wp:attachment":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/media?parent=5704"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/categories?post=5704"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/tags?post=5704"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}