{"id":4656,"date":"2023-05-08T08:00:08","date_gmt":"2023-05-08T08:00:08","guid":{"rendered":"https:\/\/benzifoundation.org\/giornata-internazionale-sulla-talassemia-2023\/"},"modified":"2023-05-08T08:00:08","modified_gmt":"2023-05-08T08:00:08","slug":"giornata-internazionale-sulla-talassemia-2023","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/giornata-internazionale-sulla-talassemia-2023\/","title":{"rendered":"Giornata internazionale sulla talassemia 2023"},"content":{"rendered":"<p>L&#8217;8 maggio 2023 \u00e8 la <strong><a href=\"https:\/\/thalassaemia.org.cy\/itd2023\/\" target=\"_blank\" rel=\"noopener\">Giornata Internazionale sulla Talassemia<\/a><\/strong>!<\/p>\n<p>Il tema dell&#8217;evento di quest&#8217;anno \u00e8 &#8220;BE AWARE.SHARE.CARE.: Strengthening Education to Bridge the Thalassaemia Care Gap&#8221;. Massimizzando le conoscenze e le competenze dei pazienti affetti da talassemia e delle persone che si prendono cura di loro, \u00e8 possibile ottenere cambiamenti positivi nei comportamenti e nei risultati legati alla salute, nella qualit\u00e0 della vita e per il carico della malattia. <\/p>\n<p>Crediamo fermamente che i pazienti siano attori chiave nel processo di ricerca scientifica e nei progressi riguardanti la salute. Incoraggiamo il <a href=\"\/?page_id=1161\" target=\"_blank\" rel=\"noopener\"><strong>coinvolgimento dei pazienti<\/strong><\/a> in questo contesto per garantire che i loro bisogni sanitari siano meglio identificati e soddisfatti. Pertanto, ci impegniamo attivamente per fornire a pazienti e cittadini <strong>informazioni accurate e affidabili<\/strong> su argomenti specifici.  <\/p>\n<p>Abbiamo una lunga esperienza nel campo delle emoglobinopatie, in particolare della talassemia e della drepanocitosi.<\/p>\n<p>Cosa sai sulla talassemia?<\/p>\n<p>Puoi saperne di pi\u00f9 consultando la nostra <a href=\"https:\/\/www.benzifoundation.org\/wp-content\/uploads\/2018\/10\/thalassemiaEN-20140505.pdf\" target=\"_blank\" rel=\"noopener\"><strong>Guida &#8220;Vivere bene con la talassemia&#8221;<\/strong>,<\/a> che rappresenta uno strumento di supporto alle famiglie e ai pazienti talassemici, per migliorare la conoscenza della malattia stessa e delle soluzioni terapeutiche. La guida \u00e8 stata sviluppata nell&#8217;ambito del progetto<strong> <a href=\"https:\/\/deepproject.cvbf.net\/\" target=\"_blank\" rel=\"noopener\">Deferiprone Evaluation in Paediatrics &#8211; DEEP<\/a><\/strong>, in collaborazione con la<strong><em> <a href=\"https:\/\/www.fithadleonardogiambrone.com\/\" target=\"_blank\" rel=\"noopener\">Fondazione Italiana &#8220;Leonardo Giambrone&#8221; per la Guarigione dalla Talassemia e Drepanocitosi<\/a><\/em><\/strong>, e tradotta in <strong>6 lingue<\/strong>. <\/p>\n<p>Non esitare a <strong><a href=\"mailto:info@benzifoundation.org\" target=\"_blank\" rel=\"noopener\">contattarci <\/a><\/strong>per ulteriori informazioni sulla guida.<\/p>\n<p>\u00c8 inoltre disponibile, sia in lingua inglese che italiana, <strong><a href=\"https:\/\/www.benzifoundation.org\/wp-content\/uploads\/2020\/12\/blood-transfusions_final.pdf\" target=\"_blank\" rel=\"noopener\">materiale informativo<\/a><\/strong> focalizzato sulle <strong>trasfusioni di sangue<\/strong>, fondamentali per i pazienti affetti da talassemia.<\/p>\n<p>E sulla drepanocitosi? \u00c8 in arrivo anche una guida dedicata! Ci stiamo lavorando nell&#8217;ambito del progetto <strong><a href=\"https:\/\/www.ariseinitiative.org\/\" target=\"_blank\" rel=\"noopener\">African Research and Innovative Initiative for Sickle Cell Education &#8211; ARISE<\/a><\/strong>, coordinato dalla Fondazione Gianni Benzi, finalizzato alla creazione di un programma di scambio di personale multidisciplinare per condividere e diffondere le migliori pratiche nello screening neonatale, nella diagnosi e nel trattamento della drepanocitosi. Ad oggi, pi\u00f9 di 35 ricercatori hanno gi\u00e0 avuto l&#8217;opportunit\u00e0 di visitare diverse istituzioni tra i partner di ARISE, inclusa la Fondazione Gianni Benzi, e di approfondire alcuni aspetti sulla drepanocitosi.<\/p>\n<p>   <\/p>\n<p>Inoltre, creare network ha un ruolo cruciale nella condivisione di conoscenze e competenze per migliorare la salute e il benessere dei pazienti. Siamo infatti attivamente coinvolti nelle attivit\u00e0 dell&#8217;<a href=\"https:\/\/www.inherentnetwork.org\/\" target=\"_blank\" rel=\"noopener\"><strong>International Hemoglobinopathy Research Network &#8211; INHERENT<\/strong><\/a> che comprende uno specifico gruppo di lavoro focalizzato sulla trasmissione delle conoscenze sulle emoglobinopatie. <\/p>\n<p>Continua a seguirci per scoprire di pi\u00f9 sulle nostre prossime attivit\u00e0!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>May 8th, 2023 is the International Thalassaemia Day. The theme of the event this year is \u201cBE AWARE.SHARE.CARE.: Strengthening Education to Bridge the Thalassaemia Care Gap\u201d <\/p>\n","protected":false},"author":1,"featured_media":4651,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[225],"tags":[222],"class_list":["post-4656","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-haemoglobinopathies","tag-emoglobinopatie"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Giornata internazionale sulla talassemia 2023 - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"International Thalassaemia Day 2023 highlights the importance of education and care to improve health outcomes for thalassaemia patients.\" \/>\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\/giornata-internazionale-sulla-talassemia-2023\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Giornata internazionale sulla talassemia 2023 - 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