{"id":4473,"date":"2025-12-12T13:53:58","date_gmt":"2025-12-12T13:53:58","guid":{"rendered":"https:\/\/benzifoundation.org\/helios-action-nuova-pubblicazione-su-hemasphere\/"},"modified":"2025-12-12T13:53:58","modified_gmt":"2025-12-12T13:53:58","slug":"helios-action-nuova-pubblicazione-su-hemasphere","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/helios-action-nuova-pubblicazione-su-hemasphere\/","title":{"rendered":"HELIOS Action: nuova pubblicazione su HemaSphere"},"content":{"rendered":"<p>Una nuova pubblicazione scientifica intitolata \u201c<strong>HELIOS Action: Advancing research, education, and equity in haemoglobinopathies across Europe and beyond<\/strong>\u201d \u00e8 stata pubblicata sulla rivista <em>HemaSphere<\/em>. L\u2019articolo \u00e8 dedicato all progetto <strong><a href=\"\/?p=18037\">HELIOS <\/a><\/strong>\u2013 <em>Haemoglobinopathies in European Liaison of Medicine and Science<\/em>, un\u2019iniziativa avviata nel 2023 e finanziata da <a href=\"https:\/\/www.cost.eu\/\">COST (European Cooperation in Science and Technology)<\/a>. <\/p>\n<p>Il lavoro analizza <strong>le principali sfide che continuano a influenzare la gestione delle emoglobinopatie, come l\u2019anemia falciforme e la talassemia<\/strong>. Sebbene si tratti di alcune delle patologie ereditarie pi\u00f9 comuni al mondo, esse sono ancora caratterizzate da sistemi di assistenza frammentati, disuguaglianze nell\u2019accesso alla diagnosi e ai trattamenti, limitata armonizzazione delle attivit\u00e0 di ricerca e carenza di programmi strutturati di formazione clinica, in particolare nei contesti a basse risorse. <\/p>\n<p>La pubblicazione descrive come il progetto HELIOS affronti queste criticit\u00e0 attraverso <strong>un modello inclusivo e collaborativo basato su attivit\u00e0 di networking e formazione<\/strong>. L\u2019Azione mira a rafforzare le infrastrutture di ricerca, promuovere la standardizzazione delle pratiche cliniche e sostenere una partecipazione equa alla ricerca e alle politiche sanitarie. Il progetto \u00e8 strutturato in cinque Gruppi di Lavoro tematici, focalizzati rispettivamente su: ricerca molecolare e diagnosi; ricerca clinica e gestione del paziente; gestione dei dati e interoperabilit\u00e0; educazione e sviluppo delle capacit\u00e0; disseminazione, divulgazione e coinvolgimento degli stakeholder.  <\/p>\n<p>Viene inoltre evidenziata la forte dimensione internazionale della rete HELIOS, che attualmente comprende oltre 245 membri provenienti da 36 Paesi, <a href=\"\/?p=19740\">con particolare attenzione all\u2019inclusivit\u00e0<\/a>, al coinvolgimento dei giovani ricercatori e alla rappresentanza dei Paesi con una minore partecipazione ai programmi di ricerca europei.<\/p>\n<p>Anche membri del team della Fondazione Gianni Benzi hanno contribuito alla pubblicazione e sono coinvolti nel progetto HELIOS: Fedele Bonifazi come <em>Leader del WG5 \u2013 Disseminazione e Outreach<\/em>, Annalisa Landi come Coordinatrice dell&#8217;area <em>Ethics, Gender Equality and Diversity<\/em>, e Francesca Basile come <em>responsabile della comunicazione<\/em>.<\/p>\n<p>Nel complesso, l\u2019articolo sottolinea come iniziative di coordinamento e collaborazione internazionale come HELIOS rappresentino uno strumento fondamentale per migliorare la qualit\u00e0 della ricerca, favorire l\u2019armonizzazione degli standard di cura e promuovere un accesso pi\u00f9 equo a terapie e servizi per le persone che vivono con emoglobinopatie, sostenendo in ultima analisi lo sviluppo di politiche sanitarie basate sull\u2019evidenza in Europa e oltre.<\/p>\n<p><a href=\"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/hem3.70258\">Leggi l\u2019articolo<\/a> completo su HemaSphere.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Una nuova pubblicazione scientifica intitolata \u201cHELIOS Action: Advancing research, education, and equity in haemoglobinopathies across Europe and beyond\u201d \u00e8 stata pubblicata sulla rivista HemaSphere. L\u2019articolo \u00e8 dedicato all progetto HELIOS \u2013 Haemoglobinopathies in European Liaison of Medicine and Science, un\u2019iniziativa avviata nel 2023 e finanziata da COST (European Cooperation in Science and Technology). Il lavoro [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4472,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[200,221],"tags":[222],"class_list":["post-4473","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-helios","category-nuove-pubblicazioni","tag-emoglobinopatie"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>HELIOS Action: nuova pubblicazione su HemaSphere - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"A new HemaSphere article highlights the HELIOS Action advancing research, training, and equity in hemoglobinopathies across Europe\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/benzifoundation.org\/it\/helios-action-nuova-pubblicazione-su-hemasphere\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"HELIOS Action: nuova pubblicazione su HemaSphere - 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