{"id":31067,"date":"2019-06-14T13:12:56","date_gmt":"2019-06-14T13:12:56","guid":{"rendered":"https:\/\/www.policlinicogemelli.it\/patient-services\/care-pathways\/teleangectasia-emorragica-hht-morbo-rendu-osler-weber\/"},"modified":"2020-10-01T09:33:26","modified_gmt":"2020-10-01T09:33:26","slug":"teleangectasia-emorragica-hht-morbo-rendu-osler-weber","status":"publish","type":"page","link":"https:\/\/www.policlinicogemelli.it\/en\/patient-services\/care-pathways\/teleangectasia-emorragica-hht-morbo-rendu-osler-weber\/","title":{"rendered":"Il Percorso clinico-assistenziale del paziente con Teleangectasia emorragica ereditaria (HHT, o morbo di Rendu-Osler Weber)"},"content":{"rendered":"<style>#kt-layout-id_60db47-32 > .kt-row-column-wrap{align-content:center;}:where(#kt-layout-id_60db47-32 > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:center;}#kt-layout-id_60db47-32 > .kt-row-column-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:var(--global-kb-gap-md, 2rem);padding-top:var( --global-kb-row-default-top, 25px );padding-bottom:var( --global-kb-row-default-bottom, 25px );padding-top:14px;padding-bottom:11px;}#kt-layout-id_60db47-32 > .kt-row-column-wrap > div:not(.added-for-specificity){grid-column:initial;}#kt-layout-id_60db47-32 > .kt-row-column-wrap{grid-template-columns:repeat(3, minmax(0, 1fr));}#kt-layout-id_60db47-32{background-color:#ffffff;}#kt-layout-id_60db47-32 > .kt-row-layout-overlay{opacity:0.30;}#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep{height:100px;}#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep svg{width:100%;}#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep svg{fill:#005f9e!important;}@media all and (max-width: 1024px){#kt-layout-id_60db47-32 > .kt-row-column-wrap > div:not(.added-for-specificity){grid-column:initial;}}@media all and (max-width: 1024px){#kt-layout-id_60db47-32 > .kt-row-column-wrap{grid-template-columns:repeat(3, minmax(0, 1fr));}}@media all and (max-width: 1024px){#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep{height:px;}}@media all and (max-width: 1024px){#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep svg{width:%;}}@media all and (max-width: 767px){#kt-layout-id_60db47-32 > .kt-row-column-wrap > div:not(.added-for-specificity){grid-column:initial;}#kt-layout-id_60db47-32 > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep{height:px;}#kt-layout-id_60db47-32 .kt-row-layout-bottom-sep svg{width:%;}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignnone\"><div id=\"kt-layout-id_60db47-32\" class=\"kt-row-layout-inner kt-row-has-bg kt-layout-id_60db47-32\"><div class=\"kt-row-column-wrap kt-has-3-columns kt-gutter-default kt-v-gutter-default kt-row-valign-middle kt-row-layout-equal kt-tab-layout-inherit kt-m-colapse-left-to-right kt-mobile-layout-row\"><style>.kadence-column_b7c05e-80 > .kt-inside-inner-col{border-color:#ffffff;border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_b7c05e-80 > .kt-inside-inner-col,.kadence-column_b7c05e-80 > .kt-inside-inner-col:before{border-top-left-radius:6px;border-top-right-radius:6px;border-bottom-right-radius:6px;border-bottom-left-radius:6px;}.kadence-column_b7c05e-80 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_b7c05e-80 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_b7c05e-80 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_b7c05e-80 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_b7c05e-80{position:relative;}@media all and (max-width: 1024px){.kadence-column_b7c05e-80 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_b7c05e-80 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_b7c05e-80\"><div class=\"kt-inside-inner-col\">\n<p>Il gruppo multidisciplinare HHT della FPG segue le <strong><a class=\"kf-link italic no-underline\" rel=\"noreferrer noopener\" aria-label=\"linee guida internazionali (opens in a new tab)\" href=\"https:\/\/www.acpjournals.org\/stoken\/default+domain\/M20-1443\/full?redirectUri=\/doi\/10.7326\/M20-1443\" target=\"_blank\">Linee Guida Internazionali<\/a><\/strong> per la Diagnosi e Cura\u00a0del paziente con Teleangectasia emorragica ereditaria cui ha contribuito in fase di revisione.\u00a0<\/p>\n<\/div><\/div>\n\n\n<style>.kadence-column_91f88a-d2 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_91f88a-d2 > .kt-inside-inner-col,.kadence-column_91f88a-d2 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_91f88a-d2 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_91f88a-d2 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_91f88a-d2 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_91f88a-d2 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_91f88a-d2{position:relative;}@media all and (max-width: 1024px){.kadence-column_91f88a-d2 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_91f88a-d2 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-2 kadence-column_91f88a-d2\"><div class=\"kt-inside-inner-col\">\n<p><em>Multidisciplinary Gemelli Group for HHT supports the\u00a0<a class=\"kf-link italic no-underline\" rel=\"noreferrer noopener\" aria-label=\"International Guideline (opens in a new tab)\" href=\"https:\/\/www.acpjournals.org\/stoken\/default+domain\/M20-1443\/full?redirectUri=\/doi\/10.7326\/M20-1443\" target=\"_blank\"><strong>International Guidelines<\/strong><\/a> for the Diagnosis and Management of Hereditary Hemorrhagic Telangiectasia<\/em><\/p>\n<\/div><\/div>\n<\/div><\/div><\/div>\n\n\n<style>.wp-block-kadence-spacer.kt-block-spacer-_3bcaf5-9b .kt-block-spacer{height:20px;}.wp-block-kadence-spacer.kt-block-spacer-_3bcaf5-9b .kt-divider{border-top-width:5px;height:1px;border-top-color:#005f9e;width:100%;border-top-style:dotted;}<\/style>\n<div class=\"wp-block-kadence-spacer aligncenter kt-block-spacer-_3bcaf5-9b\"><div class=\"kt-block-spacer kt-block-spacer-halign-center\" style=\"height:20px\"><hr class=\"kt-divider\" style=\"border-top-color:rgba(0, 95, 158, 1);border-top-width:5px;width:100%;border-top-style:dotted\"\/><\/div><\/div>\n\n\n\n<p class=\"has-text-align-center\">Il gruppo multidisciplinare HHT della FPG desidera condividere le seguenti indicazioni con coloro che soffrono di questa malattia in modo che sappiano come regolarsi e come i loro medici si comportano in questo particolare e difficile periodo.<\/p>\n\n\n\n<p class=\"has-text-align-center\"><a class=\"button small orange\" href=\"\/wp-content\/uploads\/2020\/04\/Lettera-ai-pazienti-HHT-durante-emergenza-COVID19.pdf\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"Leggi la lettera (opens in a new tab)\">Leggi la lettera<\/a><\/p>\n\n\n<style>.wp-block-kadence-spacer.kt-block-spacer-_fea2d2-ad .kt-block-spacer{height:20px;}.wp-block-kadence-spacer.kt-block-spacer-_fea2d2-ad .kt-divider{border-top-width:5px;height:1px;border-top-color:#005f9e;width:100%;border-top-style:dotted;}<\/style>\n<div class=\"wp-block-kadence-spacer aligncenter kt-block-spacer-_fea2d2-ad\"><div class=\"kt-block-spacer kt-block-spacer-halign-center\" style=\"height:20px\"><hr class=\"kt-divider\" style=\"border-top-color:rgba(0, 95, 158, 1);border-top-width:5px;width:100%;border-top-style:dotted\"\/><\/div><\/div>\n\n\n\n<div class=\"kf-accordion test kf-accordion-2\">\n<div class=\"kf-accordion-item kf-accordion-item-active\"><h3><span class=\"kf-accordion-item-label\">CHE COS&#8217;\u00c8 LA TELEANGECTASIA EMORRAGICA EREDITARIA<\/span><\/h3><div class=\"kf-accordion-item-content\">\n<p>L&#8217;HHT \u00e8 una\nrara malattia genetica, caratterizzata da dilatazioni a livello di piccoli\nvasi, cute e mucose, che si presenta in 1 persona su 5000 senza distinzione di\nsesso o gruppo etnico.<\/p>\n\n\n\n<p>La diagnosi \u00e8 clinica: Il sangue dal naso costituisce una spia (da gestire in modo appropriato con l\u2019ausilio delle tecniche otorinolaringoiatriche pi\u00f9 aggiornate) che pu\u00f2 consentire un riconoscimento precoce dell&#8217;HHT, evitando (grazie ad opportuni trattamenti) di giungere alle sue manifestazioni pi\u00f9 gravi, anch\u2019esse a carattere emorragico e legate alla presenza di malformazioni arterovenose (MAV), localizzate principalmente nei distretti cerebrale, polmonare e gastrointestinale.<\/p>\n\n\n\n<p>Non esiste\nuna terapia in grado di curare definitivamente la patologia; \u00e8 comunque\nnecessario adottare interventi terapeutici allo scopo di limitare la\nsintomatologia a carico dei vari distretti interessati. Per esempio, nei casi\ndi epistassi copiose e ricorrenti pu\u00f2 rendersi necessaria la cauterizzazione\nlaser delle teleangectasie o una ricostruzione chirurgica della mucosa nasale.<\/p>\n<\/div><\/div>\n\n\n\n<div class=\"kf-accordion-item kf-accordion-item-active\"><h3><span class=\"kf-accordion-item-label\">IL PERCORSO CLINICO-ASSISTENZIALE<\/span><\/h3><div class=\"kf-accordion-item-content\">\n<p>Il\u00a0Percorso \u00e8 stato redatto con la collaborazione dell\u2019Associazione di pazienti \u201cHHT Onlus\u201d e con il contributo degli specialisti della Fondazione Policlinico Universitario Agostino Gemelli IRCCS coinvolti nella diagnosi e nella cura di questa malattia.<\/p>\n\n\n\n<p>Esso prende\nin considerazione l\u2019eventualit\u00e0 in cui il paziente giunga direttamente\nal&nbsp;Gemelli in seguito a sintomatologia acuta che faccia sospettare la\nHHT&nbsp;(accedendo quindi al Polo Emergenza\/DEA), nonch\u00e9 quella in cui arrivi\nin conseguenza di un indirizzamento da parte del Medico di Medicina Generale o\ndi professionisti operanti in altri centri ospedalieri. <\/p>\n\n\n\n<p> Presso la struttura, il paziente viene valutato e trattato da un Ambulatorio multidisciplinare specificamente dedicato, senza dimenticare che il Percorso guarda anche, con la dovuta attenzione, agli aspetti della diagnosi precoce genetica nei familiari del malato.<\/p>\n\n\n\n<p>\u00c8 stata inoltre definita con cura la fase seguente le azioni terapeutiche, ovvero il follow-up dei pazienti, i quali sono sottoposti a dei controlli programmati per valutare l\u2019esito dei trattamenti&nbsp;erogati e monitorizzare l\u2019evolversi della situazione clinica.<\/p>\n<\/div><\/div>\n<\/div>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<style>.wp-block-kadence-advancedheading.kt-adv-heading_370bd3-69, .wp-block-kadence-advancedheading.kt-adv-heading_370bd3-69[data-kb-block=\"kb-adv-heading_370bd3-69\"]{font-style:normal;}.wp-block-kadence-advancedheading.kt-adv-heading_370bd3-69 mark.kt-highlight, .wp-block-kadence-advancedheading.kt-adv-heading_370bd3-69[data-kb-block=\"kb-adv-heading_370bd3-69\"] mark.kt-highlight{font-style:normal;color:#f76a0c;-webkit-box-decoration-break:clone;box-decoration-break:clone;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}.wp-block-kadence-advancedheading.kt-adv-heading_370bd3-69 img.kb-inline-image, .wp-block-kadence-advancedheading.kt-adv-heading_370bd3-69[data-kb-block=\"kb-adv-heading_370bd3-69\"] img.kb-inline-image{width:150px;vertical-align:baseline;}<\/style>\n<h2 id=\"kt-adv-heading_370bd3-69\" class=\"kt-adv-heading_370bd3-69 wp-block-kadence-advancedheading\">Lo Sportello HHT<\/h2>\n\n\n\n<p>La presa in\ncarico assistenziale \u00e8 agevolata dall\u2019azione di uno Sportello dedicato, il\nquale indirizza tempestivamente questi pazienti verso i nostri specialisti,\nspecie in modalit\u00e0 multidisciplinare.<\/p>\n\n\n\n<p>L&#8217;ambulatorio\ndedicato si svolger\u00e0 il gioved\u00ec pomeriggio, a partire dalle ore 15.00 nella\nstanza 9 del&nbsp;<strong>CEMAD<\/strong>&nbsp;sito al\n3 piano ala A.<\/p>\n\n\n\n<p>Per informazioni:&nbsp;<a rel=\"noreferrer noopener\" aria-label=\" (si apre in una nuova scheda)\" class=\"kf-link italic no-underline\" href=\"mailto:percorso.hht@policlinicogemelli.it\" target=\"_blank\">percorso.hht@policlinicogemelli.it<\/a><\/p>\n\n\n<style>#kt-layout-id_21656b-bd > .kt-row-column-wrap{align-content:start;}:where(#kt-layout-id_21656b-bd > .kt-row-column-wrap) > .wp-block-kadence-column{justify-content:start;}#kt-layout-id_21656b-bd > .kt-row-column-wrap{column-gap:var(--global-kb-gap-md, 2rem);row-gap:var(--global-kb-gap-md, 2rem);padding-top:var( --global-kb-row-default-top, 25px );padding-bottom:var( --global-kb-row-default-bottom, 25px );padding-top:var(--global-kb-spacing-sm, 1.5rem);padding-bottom:var(--global-kb-spacing-sm, 1.5rem);grid-template-columns:repeat(2, minmax(0, 1fr));}#kt-layout-id_21656b-bd > .kt-row-layout-overlay{opacity:0.30;}@media all and (max-width: 1024px){#kt-layout-id_21656b-bd > .kt-row-column-wrap{grid-template-columns:repeat(2, minmax(0, 1fr));}}@media all and (max-width: 767px){#kt-layout-id_21656b-bd > .kt-row-column-wrap{grid-template-columns:minmax(0, 1fr);}}<\/style>\n<div class=\"wp-block-kadence-rowlayout alignnone\"><div id=\"kt-layout-id_21656b-bd\" class=\"kt-row-layout-inner kt-layout-id_21656b-bd\"><div class=\"kt-row-column-wrap kt-has-2-columns kt-gutter-default kt-v-gutter-default kt-row-valign-top kt-row-layout-equal kt-tab-layout-inherit kt-m-colapse-left-to-right kt-mobile-layout-row\"><style>.kadence-column_d53585-ee > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_d53585-ee > .kt-inside-inner-col,.kadence-column_d53585-ee > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_d53585-ee > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_d53585-ee > .kt-inside-inner-col{flex-direction:column;}.kadence-column_d53585-ee > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_d53585-ee > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_d53585-ee{position:relative;}@media all and (max-width: 1024px){.kadence-column_d53585-ee > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_d53585-ee > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-1 kadence-column_d53585-ee\"><div class=\"kt-inside-inner-col\">\n<p class=\"has-text-align-left\"><a href=\"\/wp-content\/uploads\/2019\/10\/Guida-allaccesso-al-percorso-HHT.pdf\" target=\"_blank\" class=\"button medium orange \" rel=\"noreferrer noopener\" aria-label=\"Guida all'accesso al percorso HHT (opens in a new tab)\">Guida all&#8217;accesso al percorso HHT<\/a><\/p>\n<\/div><\/div>\n\n\n<style>.kadence-column_d37748-15 > .kt-inside-inner-col{border-top-width:0px;border-right-width:0px;border-bottom-width:0px;border-left-width:0px;}.kadence-column_d37748-15 > .kt-inside-inner-col,.kadence-column_d37748-15 > .kt-inside-inner-col:before{border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-right-radius:0px;border-bottom-left-radius:0px;}.kadence-column_d37748-15 > .kt-inside-inner-col{column-gap:var(--global-kb-gap-sm, 1rem);}.kadence-column_d37748-15 > .kt-inside-inner-col{flex-direction:column;}.kadence-column_d37748-15 > .kt-inside-inner-col > .aligncenter{width:100%;}.kadence-column_d37748-15 > .kt-inside-inner-col:before{opacity:0.3;}.kadence-column_d37748-15{position:relative;}@media all and (max-width: 1024px){.kadence-column_d37748-15 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}@media all and (max-width: 767px){.kadence-column_d37748-15 > .kt-inside-inner-col{flex-direction:column;justify-content:center;}}<\/style>\n<div class=\"wp-block-kadence-column inner-column-2 kadence-column_d37748-15\"><div class=\"kt-inside-inner-col\">\n<p class=\"has-text-align-left\"><a href=\"\/wp-content\/uploads\/2019\/11\/Access-Guide-to-the-HHT-clinical-pathway.pdf\" target=\"_blank\" class=\"button medium orange \" rel=\"noreferrer noopener\" aria-label=\"Access Guide to the HHT clinical pathway (opens in a new tab)\">Access Guide to the HHT clinical pathway<\/a><\/p>\n<\/div><\/div>\n<\/div><\/div><\/div>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Il gruppo multidisciplinare HHT della FPG segue le Linee Guida Internazionali per la Diagnosi e Cura\u00a0del paziente con Teleangectasia emorragica ereditaria cui ha contribuito in fase di revisione.\u00a0 Multidisciplinary Gemelli Group for HHT supports the\u00a0International Guidelines for the Diagnosis and Management of Hereditary Hemorrhagic Telangiectasia Il gruppo multidisciplinare HHT della FPG desidera condividere le seguenti [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":22236,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"templates\/page-kf-full.php","meta":{"_acf_changed":false,"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"class_list":{"0":"post-31067","1":"page","2":"type-page","3":"status-publish","5":"entry"},"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Teleangectasia Emorragica HHT Morbo Rendu Osler Weber | Gemelli<\/title>\n<meta name=\"description\" content=\"L\u2019HHT \u00e8 una rara malattia genetica, caratterizzata da dilatazioni a 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