{"id":4314,"date":"2026-01-25T20:14:05","date_gmt":"2026-01-25T20:14:05","guid":{"rendered":"https:\/\/benzifoundation.org\/project\/hemafair\/"},"modified":"2026-09-03T15:07:28","modified_gmt":"2026-09-03T15:07:28","slug":"hemafair","status":"publish","type":"project","link":"https:\/\/benzifoundation.org\/it\/project\/hemafair\/","title":{"rendered":"HEMAFAIR"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section\">\n<div class=\"et_pb_row_0 et_pb_row et_block_row\">\n<div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module et_pb_text_align_center\"><div class=\"et_pb_text_inner\"><p>HemaFAIR<\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_1 et_pb_section et_section_regular et_block_section\">\n<div class=\"et_pb_row_1 et_pb_row et_pb_row_3-4_1-4 et_pb_gutters2 et_block_row et_block_row_3-4_1-4\">\n<div class=\"et_pb_column_1 et_pb_column et_pb_column_3_4 et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_text_1 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module strongViola\"><div class=\"et_pb_text_inner\"><p>HemaFAIR mira a mettere in luce l\u2019eccellenza scientifica ed il potenziale di innovazione di un paese aderente al programma Widening (Cipro), attraverso una rete di eccellenza dell\u2019UE sull\u2019applicazione dei principi FAIR nella ricerca sulle malattie ematologiche rare (RHD).<\/p>\n<p>Attraverso una partnership internazionale con esperti del settore, HemaFAIR mira ad aumentare il profilo scientifico e la competitivit\u00e0 del <a href=\"https:\/\/www.cing.ac.cy\/\" target=\"_blank\" rel=\"noopener\">The Cyprus Institute of Neurology and Genetics<\/a> (coordinatore del progetto) per migliorare la posizione dei ricercatori ciprioti nei settori dell'informatica biomedica e delle malattie ematologiche rare (RHD) e per rafforzare le competenze nella gestione della ricerca e nelle attivit\u00e0 amministrative. In particolare, la componente di ricerca di HemaFAIR dimostrer\u00e0 il processo di \u00abFAIRificazione\u00bb su due piattaforme esistenti dedicate alle emoglobinopatie, un gruppo di malattie cardiache reumatiche particolarmente diffuse a Cipro, massimizzando cos\u00ec l\u2019impatto del progetto sulla societ\u00e0 locale. <\/p>\n<p>&nbsp;<\/p>\n<p><strong>RUOLO DELLA FONDAZIONE<\/strong><\/p>\n<p>La Fondazione \u00e8 responsabile delle questioni normative, etiche, legali e socia<\/p>\n<p><strong><\/strong><\/p>\n<p><strong>PRINCIPALE CONTRIBUTO DELLA FONDAZIONE<\/strong><\/p>\n<p><span>Deliverable 1.2 - Data management plan <\/span><\/p>\n<p><span>Deliverable 2.1 - Updated Data management plan<\/span><\/p>\n<p><span>Deliverable 7.1 - Training programme description<\/span><\/p>\n<p><span>Deliverable D9.1 \u2013 Methodology document for identifying suitable research and funding opportunities in RD\/RHD and biomedical informatics, with a pilot list of identified <\/span><span>opportunities<\/span><\/p>\n<p><span>Deliverable 11.1 - Set of regulatory and ELSI recommendations for the implementation of the use case<\/span><\/p>\n<p><span>Deliverable 13.1 - FAIRified PROM module on Cyprus Haemoglobinopathy Patient Registry<\/span><\/p>\n<p><span>Milestone 5 - Applicable ethical requirements to be implemented during the processing of personal data identified<\/span><\/p>\n<p><span>Milestone 7 - Design and requirements of use case shared with the Consortium<\/span><\/p>\n<p><span>Milestone 11 - Training material developed in all WPs shared with the WP7<\/span><\/p>\n<p><span>Milestone 12 - Requirements for training on regulatory and ELSI identified through surveys<\/span><\/p>\n<p><span>Milestone 15 - FAIRification of training material<\/span><\/p>\n<p><span><\/span><\/p>\n<p><strong>FINANZIATO DA<\/strong>: Horizon Europe\u2013Twinning Bottom-Up, GA 101159589, 2024-27 (<span style=\"color: #333333;\"><strong><a href=\"http:\/\/www.cordis.europa.eu\/project\/id\/101159589\" style=\"color: #333333;\">www.cordis.europa.eu\/project\/id\/101159589<\/a><\/strong><\/span>)<\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_image_0 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/funded-by-the-european-union.png\" width=\"912\" height=\"273\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/funded-by-the-european-union.png 912w, https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/funded-by-the-european-union-480x144.png 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 912px, 100vw\" class=\"wp-image-3769\" title=\"finanziato dall&#039;Unione Europea\" \/><\/span><\/div>\n\n<div class=\"et_pb_text_2 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module strongViola\"><div class=\"et_pb_text_inner\"><p><strong>DURATA:<\/strong> Giu 2024 - Giu 2027<\/p>\n<hr>\n<p><strong>PARTNER:<\/strong><\/p>\n<ul>\n<li><span><a href=\"https:\/\/www.cing.ac.cy\/\">The Cyprus Institute of Neurology and Genetics<\/a>, Cyprus (coordinator)<\/span><\/li>\n<li><span><a href=\"https:\/\/www.amsterdamumc.org\/en\/about.htm\">Amsterdam University Medical Center<\/a>, The Netherland<\/span><\/li>\n<li>Fondazione per la Ricerca Farmacologica Gianni Benzi - ETS, Italia<\/li>\n<li><span><a href=\"https:\/\/www.lumc.nl\/en\/\">Leiden University Medical Center<\/a>, The Netherland<\/span><\/li>\n<li><a href=\"https:\/\/vhir.vallhebron.com\/\">Vall d\u2019Hebr\u00f3n Institut de Recerca<\/a>, Spain<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_column_2 et_pb_column et_pb_column_1_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_image_1 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/proj_hemafair.png\" width=\"220\" height=\"220\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/proj_hemafair.png 220w, https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/proj_hemafair-150x150.png 150w\" sizes=\"(max-width: 220px) 100vw, 220px\" class=\"wp-image-3842\" title=\"proj_hemafair\" \/><\/span><\/div>\n\n<div class=\"et_pb_text_3 et_pb_text et_pb_bg_layout_light et_clickable et_pb_module et_block_module et_pb_text_align_center\"><div class=\"et_pb_text_inner\"><p><a href=\"https:\/\/hemafairproject.eu\/\" target=\"_blank\" rel=\"noopener\">www.hemafairproject.eu<\/a><\/p>\n<\/div><\/div>\n\n<ul class=\"et_pb_social_media_follow_0 et_pb_social_media_follow clearfix et_pb_bg_layout_light et_pb_text_align_center et_pb_module et_block_module\">\n<li class=\"et_pb_social_media_follow_network_0 et_pb_social_media_follow_network et_pb_social_icon et_pb_social_network_link et-social-linkedin et_pb_module et_flex_module\"><a href=\"https:\/\/www.linkedin.com\/company\/hemafair\/posts\/?feedView=all&#038;viewAsMember=true\" class=\"icon\" title=\"Segui su LinkedIn\" target=\"_self\" rel=\"noopener\"><span class=\"et_pb_social_media_follow_network_name\">Segui<\/span><\/a><\/li>\n\n<li class=\"et_pb_social_media_follow_network_1 et_pb_social_media_follow_network et_pb_social_icon et_pb_social_network_link et-social-facebook et_pb_module et_flex_module\"><a href=\"https:\/\/www.facebook.com\/profile.php?id=61562913125244&#038;sk=about\" class=\"icon\" title=\"Segui su Facebook\" target=\"_self\" rel=\"noopener\"><span class=\"et_pb_social_media_follow_network_name\">Segui<\/span><\/a><\/li>\n\n<li class=\"et_pb_social_media_follow_network_2 et_pb_social_media_follow_network et_pb_social_icon et_pb_social_network_link et-social-instagram et_pb_module et_flex_module\"><a href=\"https:\/\/www.instagram.com\/hemafair\/\" class=\"icon\" title=\"Segui su Instagram\" target=\"_self\" rel=\"noopener\"><span class=\"et_pb_social_media_follow_network_name\">Segui<\/span><\/a><\/li>\n\n<li class=\"et_pb_social_media_follow_network_3 et_pb_social_media_follow_network et_pb_social_icon et_pb_social_network_link et-social-twitter et_pb_module et_flex_module\"><a href=\"https:\/\/x.com\/HemaFAIRproject\" class=\"icon\" title=\"Segui su X\" target=\"_self\" rel=\"noopener\"><span class=\"et_pb_social_media_follow_network_name\">Segui<\/span><\/a><\/li>\n\n<li class=\"et_pb_social_media_follow_network_4 et_pb_social_media_follow_network et_pb_social_icon et_pb_social_network_link et-social-youtube et_pb_module et_flex_module\"><a href=\"https:\/\/www.youtube.com\/@HemaFAIR\" class=\"icon\" title=\"Segui su Youtube\" target=\"_self\" rel=\"noopener\"><span class=\"et_pb_social_media_follow_network_name\">Segui<\/span><\/a><\/li>\n<\/ul>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_2 et_pb_section et_section_regular et_block_section\">\n<div class=\"et_pb_row_2 et_pb_row et_block_row\">\n<div class=\"et_pb_column_3 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_text_4 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module titViola1\"><div class=\"et_pb_text_inner\"><h3>Guarda tutti gli aggiornamenti del progetto<\/h3>\n<\/div><\/div>\n\n<div class=\"et_pb_group_carousel_0 et_pb_group_carousel et_pb_group et_pb_module et_pb_group_carousel_arrows_outside et_pb_group_carousel_dots_center et_pb_group_carousel_dots_below et_pb_group_carousel_slides_3\"><div class=\"et_pb_group_carousel_container\"><div class=\"et_pb_group_carousel_track\"><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_0 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"0\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_2 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/annalisa-landi-al-federated-learning-hackathon-di-hemafair\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/05\/Federated-Data-Analysis-Training-School-Hackathon-400x250.png\" title=\"Federated Data Analysis Training School &amp; Hackathon\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/05\/Federated-Data-Analysis-Training-School-Hackathon-400x250.png 400w\" class=\"wp-image-5366\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_0 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">Annalisa Landi al Federated Learning Hackathon di HemaFAIR<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_1 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"1\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_3 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/hemafair-e-helios-contribuiscono-alla-consultazione-pubblica-dellue-sul-piano-dazione-per-le-donne-nella-ricerca-nellinnovazione-e-nelle-startup\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/03\/dimensioni-ottimali-per-wordpress-4-400x250.png\" title=\"Piano d&#039;azione per le donne nella ricerca, nell&#039;innovazione e nelle startup\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/03\/dimensioni-ottimali-per-wordpress-4-400x250.png 400w\" class=\"wp-image-4801\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_1 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">HemaFAIR e HELIOS contribuiscono alla consultazione pubblica dell&#8217;UE sul Piano d&#8217;azione per le donne nella ricerca, nell&#8217;innovazione e nelle startup<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_2 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"2\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_4 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/parita-di-genere-webinar-sul-contesto-normativo-dellue\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/02\/Gender-equality-webinar-on-the-EU-framework-400x250.png\" title=\"Gender equality webinar on the EU framework\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/02\/Gender-equality-webinar-on-the-EU-framework-400x250.png 400w\" class=\"wp-image-4001\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_2 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">Parit\u00e0 di genere: webinar sul contesto normativo dell\u2019UE<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_3 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"3\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_5 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/fondazione-gianni-benzi-alla-conferenza-ascat-2025\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ASCAT-2025-400x250.jpg\" title=\"ASCAT-2025\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ASCAT-2025-400x250.jpg 400w\" class=\"wp-image-2142\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_3 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">Fondazione Gianni Benzi alla Conferenza ASCAT 2025<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_4 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"4\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_6 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/fair-principles-training-school\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/FAIR-principles-training-school-1-400x250.jpg\" title=\"FAIR-principles-training-school-1\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/FAIR-principles-training-school-1-400x250.jpg 400w\" class=\"wp-image-1958\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_4 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">FAIR Principles Training School<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_5 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"5\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_7 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/elsi-e-protezione-dei-dati-sulle-malattie-rare\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/elsi-and-data-protection-for-rare-diseases-data-400x250.jpg\" title=\"elsi-and-data-protection-for-rare-diseases-data\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/elsi-and-data-protection-for-rare-diseases-data-400x250.jpg 400w\" class=\"wp-image-1896\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_5 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">ELSI e protezione dei dati sulle malattie rare<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_6 et_pb_group et-last-child et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"6\" data-loop-source=\"loop-lms8qho26x\">\n<div class=\"et_pb_image_8 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/19a-conferenza-annuale-ascat\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ASCAT-2024-400x250.png\" title=\"ASCAT-2024\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ASCAT-2024-400x250.png 400w\" class=\"wp-image-1767\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_6 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">19\u00aa Conferenza annuale ASCAT<\/h1><\/div><\/div>\n<\/div><\/div><\/div><\/div><span class=\"et_pb_group_carousel_arrow et_pb_group_carousel_arrow_prev\" role=\"button\" tabindex=\"0\" aria-label=\"Previous slide\"><span class=\"et-pb-icon\">4<\/span><\/span><span class=\"et_pb_group_carousel_arrow et_pb_group_carousel_arrow_next\" role=\"button\" tabindex=\"0\" aria-label=\"Next slide\"><span class=\"et-pb-icon\">5<\/span><\/span><div class=\"et_pb_group_carousel_dots\"><\/div><\/div>\n<\/div>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4313,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"project_category":[218],"project_tag":[],"class_list":["post-4314","project","type-project","status-publish","has-post-thumbnail","hentry","project_category-in-corso"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>HEMAFAIR - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"HemaFAIR promuove i dati FAIR, l&#039;informatica biomedica e la ricerca sulle malattie ematologiche rare attraverso la collaborazione europea.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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