{"id":4692,"date":"2024-11-05T08:30:19","date_gmt":"2024-11-05T08:30:19","guid":{"rendered":"https:\/\/benzifoundation.org\/viviana-giannuzzi-al-world-orphan-drug-congress-2024\/"},"modified":"2024-11-05T08:30:19","modified_gmt":"2024-11-05T08:30:19","slug":"viviana-giannuzzi-al-world-orphan-drug-congress-2024","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/viviana-giannuzzi-al-world-orphan-drug-congress-2024\/","title":{"rendered":"Viviana Giannuzzi al World Orphan Drug Congress 2024"},"content":{"rendered":"<p>La Fondazione Gianni Benzi \u00e8 lieta di annunciare <a href=\"\/?p=14080\">la partecipazione della nostra Responsabile del Dipartimento di Ricerca e Innovazione, Viviana Giannuzzi<\/a>, al <strong>World Orphan Drug Congress 2024<\/strong>, tenutosi a Barcellona dal 22 al 25 ottobre. Viviana ha tenuto una conferenza sul lavoro svolto dalla Fondazione Benzi in collaborazione con il coordinatore, il team di Consulenti Etici e altri partner del <a href=\"https:\/\/www.ejprarediseases.org\/\" target=\"_blank\" rel=\"noopener\">progetto EJP-RD<\/a>, che ha aperto la strada al nuovo <a href=\"\/?page_id=601\" target=\"_blank\" rel=\"noopener\">progetto ERDERA<\/a>, l\u2019iniziativa a livello europeo dedicata alla ricerca sulle malattie rare e alla cura dei pazienti. Nella presentazione intitolata \u201c<em>Etica e Linee Guida Regolatorie per la Ricerca Non Profit sulle Malattie Rare: L\u2019Esperienza di un Programma Finanziato dall\u2019Unione Europe<\/em>a\u201d, ha descritto le sfide etiche e regolatorie uniche affrontate dai ricercatori, sottolineando il ruolo cruciale di un supporto completo in ambito etico e regolatorio per aiutarli ad affrontare tali questioni. Ha inoltre evidenziato l\u2019importanza di standard etici e linee guida regolatorie per garantire pratiche di ricerca responsabili. Inoltre, Viviana ha partecipato a due tavole rotonde su temi fondamentali nel campo delle malattie rare. La prima era dedicata al <strong>potenziale e alle sfide dell\u2019Intelligenza Artificiale nella ricerca sulle malattie rare<\/strong>. Ha presentato lo stato dell\u2019arte del quadro regolatorio esistente nell&#8217;UE, mirato a mantenere accuratezza, affidabilit\u00e0 e integrit\u00e0 etica nelle applicazioni di AI, specialmente nei sistemi ad alto rischio. Nei contesti di malattie rare, dove le dimensioni dei campioni sono spesso limitate, l\u2019AI mostra potenzialit\u00e0 per migliorare diagnosi e trattamenti. Viviana ha sottolineato ulteriori misure di salvaguardia per proteggere la privacy dei pazienti, compreso il rispetto rigoroso del GDPR tramite minimizzazione dei dati, anonimizzazione e crittografia, e meccanismi per prevenire pregiudizi nelle applicazioni di AI ad alto rischio. La seconda tavola rotonda ha riguardato l\u2019accesso ai <strong>trattamenti per i pazienti con malattie rare in Europa<\/strong>. Viviana ha condiviso riflessioni sull\u2019impatto della diversificata disponibilit\u00e0 e accessibilit\u00e0 dei farmaci orfani nei vari paesi europei, nonostante tali farmaci siano autorizzati centralmente. Questa disparit\u00e0 rappresenta ancora un problema attuale e richiede soluzioni, come una armonizzazione dei prezzi e misure per migliorare la disponibilit\u00e0, per rendere i farmaci orfani pi\u00f9 accessibili in tutti gli stati membri dell\u2019UE. Il contributo e la partecipazione di Viviana sottolineano l\u2019impegno della Fondazione Gianni Benzi nel promuovere progressi etici, regolatori e tecnologici nella ricerca sulle malattie rare. Siamo entusiasti di continuare la collaborazione e il dialogo all\u2019interno della comunit\u00e0 delle malattie rare per raggiungere soluzioni sanitarie pi\u00f9 eque in tutta Europa.        <\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Fondazione Gianni Benzi \u00e8 lieta di annunciare la partecipazione della nostra Responsabile del Dipartimento di Ricerca e Innovazione, Viviana Giannuzzi, al World Orphan Drug Congress 2024, tenutosi a Barcellona dal 22 al 25 ottobre. Viviana ha tenuto una conferenza sul lavoro svolto dalla Fondazione Benzi in collaborazione con il coordinatore, il team di Consulenti [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4691,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[197,213],"tags":[239,223],"class_list":["post-4692","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-erdera","category-eventi","tag-intelligenza-artificiale-in-medicina","tag-malattie-rare"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Viviana Giannuzzi al World Orphan Drug Congress 2024 - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"Dr. Giannuzzi presented on ethics, AI, and treatment access in rare disease research at the 2024 World Orphan Drug Congress.\" \/>\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\/viviana-giannuzzi-al-world-orphan-drug-congress-2024\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Viviana Giannuzzi al World Orphan Drug Congress 2024 - 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