{"id":4617,"date":"2024-05-30T13:45:45","date_gmt":"2024-05-30T13:45:45","guid":{"rendered":"https:\/\/benzifoundation.org\/ejp-rd-la-conferenza-finale\/"},"modified":"2024-05-30T13:45:45","modified_gmt":"2024-05-30T13:45:45","slug":"ejp-rd-la-conferenza-finale","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/","title":{"rendered":"EJP-RD: la conferenza finale"},"content":{"rendered":"<p><strong>La conferenza finale del progetto <a href=\"https:\/\/www.ejprarediseases.org\/\" target=\"_blank\" rel=\"noopener\">EJP RD (European Joint Programme on Rare Diseases) <\/a>si \u00e8 tenuta a Bari il 27 e 28 maggio 2024<\/strong>. Oltre 150 ricercatori, clinici, pazienti, finanziatori della ricerca e rappresentanti dell&#8217;industria hanno partecipato all&#8217;evento condividendo le novit\u00e0 pi\u00f9 aggiornate provenienti dalla ricerca sulle malattie rare e i risultati del progetto offerti alla comunit\u00e0 scientifica.<br \/>\nLa Fondazione Gianni Benzi, uno dei partner chiave del progetto, \u00e8 stata tra gli organizzatori dell&#8217;evento<br \/>\nIl nostro Presidente ha accolto i partecipanti insieme ai rappresentanti del coordinatore del progetto e della Commissione europea.<br \/>\nDurante la conferenza finale, Viviana Giannuzzi ha presieduto la sessione dedicata alle politiche sanitarie e di ricerca e al possibile impatto delle iniziative future, dove Annalisa Landi ha avuto l&#8217;opportunit\u00e0 di condividere il contributo di EJP RD in questo campo.<br \/>\nIl lavoro di EJP RD rappresenta un&#8217;importante pietra miliare nella lotta alle malattie rare, in quanto sta creando un ecosistema globale e sostenibile per la ricerca medica, l&#8217;assistenza e l&#8217;innovazione dedicate alle malattie rare. La<br \/>\nFondazione Gianni Benzi \u00e8 orgogliosa di aver svolto un ruolo chiave in questa iniziativa guidando le attivit\u00e0 etiche, normative e legali, contribuendo cos\u00ec agli importanti risultati dell&#8217;EJP RD.<br \/>\nContinueremo ad impegnarci per migliorare la vita delle persone affette da malattie rare.<\/p>\n<p>&nbsp;<\/p>\n\n\t\t<style>\n\t\t\t#gallery-1 {\n\t\t\t\tmargin: auto;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-item {\n\t\t\t\tfloat: left;\n\t\t\t\tmargin-top: 10px;\n\t\t\t\ttext-align: center;\n\t\t\t\twidth: 33%;\n\t\t\t}\n\t\t\t#gallery-1 img {\n\t\t\t\tborder: 2px solid #cfcfcf;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-caption {\n\t\t\t\tmargin-left: 0;\n\t\t\t}\n\t\t\t\/* see gallery_shortcode() in wp-includes\/media.php *\/\n\t\t<\/style>\n\t\t<div id='gallery-1' class='gallery galleryid-4617 gallery-columns-3 gallery-size-medium'><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/fedele-bonifazi-ejp-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"250\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/Fedele-Bonifazi-EJP-300x250.jpg\" class=\"attachment-medium size-medium\" alt=\"\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/viviana-giannuzzi-ejp-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"250\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/Viviana-Giannuzzi-EJP-300x250.jpg\" class=\"attachment-medium size-medium\" alt=\"\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/annalisa-landi-ejp-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"250\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/Annalisa-Landi-EJP-300x250.jpg\" class=\"attachment-medium size-medium\" alt=\"\" \/><\/a>\n\t\t\t<\/dt><\/dl><br style=\"clear: both\" \/><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/ejp-rd-bari-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"250\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/EJP-RD-Bari-300x250.jpg\" class=\"attachment-medium size-medium\" alt=\"\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/ejp-bari-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"250\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/EJP-Bari-300x250.jpg\" class=\"attachment-medium size-medium\" alt=\"\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/benzifoundation.org\/it\/ejp-rd-la-conferenza-finale\/fondazione-benzi-ejp-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"250\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/Fondazione-Benzi-EJP-300x250.jpg\" class=\"attachment-medium size-medium\" alt=\"\" \/><\/a>\n\t\t\t<\/dt><\/dl><br style=\"clear: both\" \/>\n\t\t<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>La conferenza finale del progetto EJP RD (European Joint Programme on Rare Diseases) si \u00e8 tenuta a Bari il 27 e 28 maggio 2024. Oltre 150 ricercatori, clinici, pazienti, finanziatori della ricerca e rappresentanti dell&#8217;industria hanno partecipato all&#8217;evento condividendo le novit\u00e0 pi\u00f9 aggiornate provenienti dalla ricerca sulle malattie rare e i risultati del progetto offerti [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4605,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[224,193,213],"tags":[223],"class_list":["post-4617","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aggiornamenti-dai-progetti","category-ejp-rd","category-eventi","tag-malattie-rare"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>EJP-RD: la conferenza finale - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"The EJP final conference highlighted advances in rare disease research and innovation, fostering a global ecosystem for medical progress.\" \/>\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\/ejp-rd-la-conferenza-finale\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"EJP-RD: la conferenza finale - 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