{"id":5759,"date":"2024-02-01T09:46:00","date_gmt":"2024-02-01T08:46:00","guid":{"rendered":"https:\/\/community.ehc.eu\/uncategorized-hr\/ehc-i-ern-eurobloodnet-tema-fokusa-von-willebrandova-bolest-vwd\/"},"modified":"2026-04-14T16:05:31","modified_gmt":"2026-04-14T14:05:31","slug":"ehc-i-ern-eurobloodnet-tema-fokusa-von-willebrandova-bolest-vwd","status":"publish","type":"post","link":"https:\/\/community.ehc.eu\/hr\/projekti\/ehc-i-ern-eurobloodnet-tema-fokusa-von-willebrandova-bolest-vwd\/","title":{"rendered":"EHC i ERN-EuroBloodNet &#8220;Tema fokusa: von Willebrandova bolest (VWD)&#8221;"},"content":{"rendered":"\n<p><strong>EHC s ponosom najavljuje pokretanje svog zajedni\u010dkog obrazovnog projekta zajedno s ERN-EuroBloodNet &#8220;Tema fokusa: von Willebrandova bolest (VWD)&#8221; za pacijente, organizacije pacijenata i zdravstvene djelatnike<\/strong>.<\/p>\n\n<p><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-vivid-red-color\"><strong>Za prijavu na cijeli program ili odabrane webinare, molimo posjetite <\/strong><\/mark><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\">ERN EuroBloodNet web stranicu.<\/a><\/strong><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-vivid-red-color\"><strong> <\/strong><\/mark><\/p>\n\n<p>Ovaj projekt koordiniraju ERN i EHC, koje predstavljaju EHC odbor za VWD i predstavnici pacijenata s VWD-om. Ovaj obrazovni program nastaje u partnerstvu s <a href=\"https:\/\/www.eurordis.org\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>EURORDIS-Rare Diseases Europe<\/strong><\/a> i podr\u017eavaju ga \u010dlanovi znanstvenog odbora: prof. <a href=\"https:\/\/eurobloodnet.eu\/members\/experts\/228\/sophie-susen\"><strong>S<\/strong><\/a><a href=\"https:\/\/eurobloodnet.eu\/members\/experts\/228\/sophie-susen\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>ophie Susen<\/strong><\/a> (CHU de Lille, Francuska), prof. <a href=\"https:\/\/eurobloodnet.eu\/members\/experts\/317\/jeroen-eikenboom\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Jeroen Eikenboom<\/strong><\/a> (Medicinski centar Sveu\u010dili\u0161ta Leiden, Nizozemska) i prof. <a href=\"https:\/\/eurobloodnet.eu\/members\/experts\/56\/flora-peyvandi\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Flora Peyvandi<\/strong><\/a> (Zaklada IRCCS Ca&#8217;Granda Ospedale Maggiore Policlinico, Milano, Italija). <\/p>\n\n<p>VWD je naj\u010de\u0161\u0107i poreme\u0107aj krvarenja koji poga\u0111a do 1% op\u0107e populacije, no VWD je \u010desto zanemaren i zasjenjen hemofilijom. Ovaj program ima za cilj razlikovati VWD od hemofilije te se fokusira na posebnosti ovog poreme\u0107aja zgru\u0161avanja. Program tako\u0111er ima za cilj raspraviti vrlo aktualna podru\u010dja vezana uz VWD me\u0111u pacijentima i zdravstvenim djelatnicima kako bi se omogu\u0107io uvid u izazove s kojima se suo\u010davaju osobe koje \u017eive s ovom rijetkom bole\u0161\u0107u, uklju\u010duju\u0107i kvalitetu \u017eivota, pristup lije\u010denju i skrbi, medicinske usluge dostupne u Europi, dijagnostiku i opcije lije\u010denja te cjelokupno \u017eivotno putovanje pacijenta. Daljnji cilj ovog programa je \u0161irenje najnovijeg znanja me\u0111u zainteresiranim hematolozima, ginekologima, internistima, pedijatrijima, medicinskim sestrama ili drugim zdravstvenim djelatnicima i organizacijama pacijenata u podru\u010dju VWD-a. U kona\u010dnici, ovaj pristup ima za cilj podr\u017eati bolju skrb za pacijente.    <\/p>\n\n<p><strong><em>Ovaj program akreditiran je od strane Europskog odbora za akreditaciju hematologije. Sudionici \u0107e dobiti 1 bod za kontinuiranu medicinsku edukaciju ako sudjeluju u jednom online webinaru. <\/em><\/strong><\/p>\n\n<p>Pokretanje programa tempirano je u skladu s Europskim danom podizanja svijesti o VWD-u, 1. velja\u010de.<\/p>\n\n<p>PROGRAM<\/p>\n\n<ul class=\"wp-block-list\">\n<li>13 sesija, jednom mjese\u010dno \u010detvrtkom, od 17:30 do 19:00 (CET).<\/li>\n\n\n\n<li>35 minuta prezentacije + 35 minuta za pitanja i odgovore<\/li>\n\n\n\n<li>Na Zoomu<\/li>\n\n\n\n<li>Program \u0107e biti snimljen i dio <strong><a href=\"https:\/\/www.youtube.com\/channel\/UC7011seQKL7STmLpWPmUFig\" target=\"_blank\" rel=\"noreferrer noopener\">ERN-EuroBloodNet web stranice i EDU YouTube kanala<\/a> <\/strong>te EHC platformi.<\/li>\n<\/ul>\n\n<p><strong>PROGRAM<\/strong><\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong>VWD nije hemofilija<\/strong>, 1<sup>.<\/sup> velja\u010de 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Jeroen Eikenboom (Medicinski centar Sveu\u010dili\u0161ta Leiden, Nizozemska), Baiba Ziemele (Latvijsko dru\u0161tvo za hemofiliju, EHC odbor za VWD, WFH VWD odbor, ERN-EuroBloodNet ePAG).<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Genetika VWD-a<\/strong>, 7<sup>.<\/sup> o\u017eujka 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Frank Leebeek (Erasmus MC: University Medical Center Rotterdam, Nizozemska) i Jo Traunter (supredsjednica EHC VWD odbora).<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Tip ne definira simptome VWD-a<\/strong>, 4<sup>. <\/sup>travnja 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Riitta Lassila (profesorica koagulacijske medicine, Sveu\u010dili\u0161te u Helsinkiju, Finska, poreme\u0107aji koagulacije, hematologije, Sveobuhvatni centar za rak, Centralna bolnica Sveu\u010dili\u0161ta u Helsinkiju, Helsinki, Finska) i Hannah Yarnal (UK Haemophilia Society).<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Ljudi s VWD-om tako\u0111er krvare,<\/strong> 9<sup>.<\/sup> svibnja 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Michele Lavin (\u0160kola farmacije i biomolekularnih znanosti (PBS) Dublin, Irska) i prof. Dearbhla Dohert (Sveu\u010dili\u0161na bolnica St. Vincent&#8217;s, Dublin, Irska), Baiba Ziemele (Latvijsko dru\u0161tvo za hemofiliju, EHC VWD, WFH VWD odbor, ERN-EuroBloodNet ePAG).<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Ne dopustite ljudima da krvare na putu do lije\u010denja: to\u010dna dijagnoza VWD-a<\/strong>, 6<sup>.<\/sup> lipnja 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Susie Shapiro (Oxford University Hospital, Oxford, UK), Georgia Korosidou (Gr\u010dko dru\u0161tvo za hemofiliju, \u010dlanica upravnog odbora) i Jo Traunter (supredsjednica EHC VWD odbora)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Lije\u010denje VWD-a: koje su opcije<\/strong>, 11<sup>.<\/sup> srpnja 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Sophie Susan (CHU de Lille, Francuska) i Cathy Verbraeken (EHC VWD odbor)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Operacija<\/strong>, 19. rujna 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Flora Peyvandi (Zaklada IRCCS Ca&#8217;Granda Ospedale Maggiore Policlinico, Milano, Italija) i Julia Rauscher (supredsjednica EHC VWD odbora)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>I \u017eene krvare<\/strong>, 17. listopada 2024.<sup><\/sup>\n<ul class=\"wp-block-list\">\n<li>Beatrice Nolan (Children&#8217;s Health Ireland, Dublin, Irska), Karin van Galen (University Medical Center Utrecht, Nizozemska<strong>), <\/strong>Natalie Lawson (specijalisti\u010dka medicinska sestra za hemofiliju, Dje\u010dja bolnica u Birminghamu) i Cathy Verbraeken (EHC VWD odbor)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Porodni\u0161tvo, <\/strong>28. studenog 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Karin van Galen (University Medical Center Utrecht, Nizozemska) i prof. Rezan Abdul-Kadir (University College London, UK), Jo Traunter (supredsjednica EHC VWD odbora) i Debra Pollard (napredna medicinska sestra prakti\u010darka, biv\u0161a glavna medicinska sestra u Katharine Dormandy Haemophilia Centre, Royal Free Hospital, London, UK)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Starenje, <\/strong>5. prosinca 2024.\n<ul class=\"wp-block-list\">\n<li>prof. Giancarlo Castaman (AOU Careggi, Firenca, Italija), Nicolas Giraud (Association fran\u00e7aise des h\u00e9mophiles) i Cathy Harrison (napredna medicinska sestra specijalistica za hemofiliju i hemostazu u Sheffield Haemophilia &amp; Thrombosis Centre)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>VWD u hitnoj slu\u017ebi<\/strong>, 16<sup>.<\/sup> sije\u010dnja 2025.\n<ul class=\"wp-block-list\">\n<li>Flora Peyvandi (Zaklada IRCCS Ca&#8217;Granda Ospedale Maggiore Policlinico, Milano, Italija) i Sunny Maini (UK Haemophilia Society).<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><strong>Emocionalna trauma<\/strong>, 13. velja\u010de 2025. <br\/> dr. Lotte Haverman, voditeljica istra\u017eiva\u010dke grupe i klini\u010dka pedijatrijska psihologinja psihosocijalnog odjela u Emma dje\u010djoj bolnici Amsterdam UMC-a) i Jo Traunter (supredsjednica EHC VWD odbora)<\/li>\n\n\n\n<li><strong>Pobolj\u0161ajte kvalitetu \u017eivota pacijenata s VWD-om, <\/strong>20. o\u017eujka 2025.\n<ul class=\"wp-block-list\">\n<li>dr. Linda Myrin Westesson (Sveu\u010dili\u0161na bolnica Sahlgrenska, \u0160vedska), Cathy Verbraeken (EHC VWD odbor) i Annabel Kattai (Estonsko dru\u0161tvo za hemofiliju)<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n\n<p><strong>Molimo kontaktirajte nas za sva pitanja na <a href=\"mailto:vwd@ehc.eu\">vwd@ehc.eu<\/a><\/strong>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>EHC s ponosom najavljuje pokretanje svog zajedni\u010dkog obrazovnog projekta zajedno s ERN-EuroBloodNet &#8220;Tema fokusa: von Willebrandova bolest (VWD)&#8221; za pacijente, organizacije pacijenata i zdravstvene djelatnike.<\/p>\n","protected":false},"author":3,"featured_media":5760,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[224],"tags":[187,146],"class_list":["post-5759","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-projekti","tag-serija-webinara","tag-vwd"],"acf":[],"jetpack_featured_media_url":"https:\/\/community.ehc.eu\/wp-content\/uploads\/2024\/02\/ERN-webinars.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5759","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\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/comments?post=5759"}],"version-history":[{"count":1,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5759\/revisions"}],"predecessor-version":[{"id":5762,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/posts\/5759\/revisions\/5762"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/media\/5760"}],"wp:attachment":[{"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/media?parent=5759"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/categories?post=5759"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/community.ehc.eu\/hr\/wp-json\/wp\/v2\/tags?post=5759"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}