{"id":52,"date":"2022-01-25T17:19:16","date_gmt":"2022-01-25T16:19:16","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=52"},"modified":"2025-05-12T16:39:58","modified_gmt":"2025-05-12T14:39:58","slug":"our-eu-partnerships","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/it\/about-us\/our-eu-partnerships\/","title":{"rendered":"Le nostre collaborazioni con l'UE"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"548\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2025\/05\/ERDERA-alt-768x548-1.png\" alt=\"\" class=\"wp-image-7494\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2025\/05\/ERDERA-alt-768x548-1.png 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2025\/05\/ERDERA-alt-768x548-1-600x428.png 600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>L'Alleanza europea per la ricerca sulle malattie rare \u00e8 un'organizzazione <\/strong>partenariato cofinanziato dalla Commissione europea, dagli Stati membri dell\u2019Unione europea e da altri soggetti. Subentrando al Programma congiunto europeo per le malattie rare (EJPRD), le missioni generali di ERDERA consistono nel promuovere la ricerca di base e le applicazioni cliniche, favorire il coinvolgimento dei pazienti e favorire importanti collaborazioni internazionali.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per saperne di pi\u00f9 sulla partnership ERDERA, consulta il nostro <a href=\"https:\/\/ern-ithaca.eu\/it\/erdera-2\/\">pagina web dedicata.<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/erdera.org\/about\/\">https:\/\/erdera.org\/about\/ <\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"430\" height=\"145\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Solve-RD-LOGO.png\" alt=\"\" class=\"wp-image-263\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>Solve-RD<\/strong> (\u201cSolve-RD \u2013 risolvere i casi irrisolti di malattie rare\u201d) \u00e8 un progetto di ricerca finanziato dalla Commissione europea attraverso il programma Orizzonte 2020, che mira a contribuire a <strong>trovare una diagnosi per tutti i casi irrisolti di malattie rare<\/strong>. ITHACA \u00e8 un partner chiave di questo progetto di ricerca paneuropeo e il coordinatore di ITHACA \u00e8 membro di diritto del comitato direttivo di Solve-RD.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/solve-rd.eu\/\">Solve-RD \u2013 Risolvere le malattie rare ancora irrisolte<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"870\" height=\"386\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-orphanet.png\" alt=\"\" class=\"wp-image-264\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-orphanet.png 870w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-orphanet-600x266.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-orphanet-768x341.png 768w\" sizes=\"auto, (max-width: 870px) 100vw, 870px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>Orphanet<\/strong>, un sito web europeo che offre un <strong>inventario e classificazione delle malattie rare<\/strong> (RD), in cui ogni voce \u00e8 associata a un proprio codice ORPHA, un\u2019enciclopedia di articoli di revisione redatti da esperti e sottoposti a revisione tra pari, varie linee guida cliniche, criteri diagnostici, indicazioni per i test genetici, schede informative sulla disabilit\u00e0 ecc., e un elenco di servizi (cliniche, laboratori, progetti di ricerca, registri, sperimentazioni cliniche, associazioni di pazienti).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.orpha.net\">https:\/\/www.orpha.net<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"192\" height=\"192\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/SysNDD-logo.png\" alt=\"\" class=\"wp-image-265\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>SysNDD<\/strong> \u00e8 una selezione curata manualmente da esperti <strong>elenco dei geni gi\u00e0 identificati e implicati nei disturbi dello sviluppo neurologico (NDD)<\/strong> e classificati in geni primari e geni candidati. Per consentire l\u2019interoperabilit\u00e0 e la mappatura tra database orientati ai geni, ai fenotipi o alle malattie, SysNDD basa il proprio approccio su unit\u00e0 curate composte da gene-eredit\u00e0-malattia, le cosiddette entit\u00e0. SysNDD viene aggiornato ogni 3-4 mesi e pu\u00f2 essere utilizzato per un ampio spettro di attivit\u00e0 sia nel campo della ricerca che in quello diagnostico.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/sysndd.dbmr.unibe.ch\">https:\/\/sysndd.dbmr.unibe.ch<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"230\" height=\"81\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Gestalt-Matcher-Logo.png\" alt=\"\" class=\"wp-image-266\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>Database di GestaltMatcher<\/strong> \u00e8 un <strong>raccolta di fotografie mediche selezionate relative alle sindromi genetiche.<\/strong> Il progetto mira a migliorare la trasparenza e l\u2019accessibilit\u00e0 dei risultati scientifici e a rafforzare la collaborazione tra ricercatori e medici, al fine di individuare pazienti con somiglianze facciali e, di conseguenza, possibilmente diagnosticare casi di malattie ultra-rare o definire una nuova sindrome in pazienti con caratteristiche simili<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/db.gestaltmatcher.org\/\">Database di GestaltMatcher<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"200\" height=\"103\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/eurordis_logo-1.jpg\" alt=\"\" class=\"wp-image-6224\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>EURORDIS \u2013 Malattie rare in Europa <\/strong>\u00e8 un\u2019alleanza unica nel suo genere, senza scopo di lucro, che riunisce oltre 1.000 associazioni di pazienti affetti da malattie rare provenienti da 74 paesi, che collaborano per migliorare la vita di oltre 30 milioni di persone affette da malattie rare in Europa. Mettendo in contatto pazienti, famiglie e associazioni di pazienti, oltre a riunire tutte le parti interessate e a mobilitare la comunit\u00e0 delle malattie rare, EURORDIS rafforza la voce dei pazienti e influenza la ricerca, le politiche e i servizi a loro destinati. In particolare, EURORDIS \u00e8 responsabile della creazione di <strong>Associazioni europee di tutela dei pazienti<\/strong> (ePAGs), un\u2019organizzazione senza scopo di lucro che rappresenta i pazienti affetti da malattie rare <em>in particolare all\u2019interno di un ERN<\/em>. Per saperne di pi\u00f9 su ePAGs, puoi consultare il sito web di ITHACA qui. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.eurordis.org\/fr\/\">Home \u2013 EURORDIS<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"2568\" height=\"1191\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1.png\" alt=\"\" class=\"wp-image-6260\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1.png 2568w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1-600x278.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1-1900x881.png 1900w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1-768x356.png 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1-1536x712.png 1536w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1-2048x950.png 2048w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/logo-JARDIN-1-1320x612.png 1320w\" sizes=\"auto, (max-width: 2568px) 100vw, 2568px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>L'azione comune sull'integrazione delle reti di riferimento europei (ERN) nei sistemi sanitari nazionali&nbsp;<\/strong>(Progetto JARDIN) \u00e8 stato realizzato nell\u2019ambito del programma EU4Health (EU4H). JARDIN si basa su un consorzio di 29 Stati partner: 27 Stati membri dell\u2019UE (SM) + Norvegia + Ucraina. Il progetto coinvolge 55 soggetti interessati (tutti i ministeri della salute, numerosi centri di ricerca in ambito sanitario, infrastrutture di ricerca\u2026). Molti centri di ricerca in ambito sanitario collegati al 1\u00b0 e al 7\u00b0 Programma Quadro sono partecipanti ufficiali. L\u2019accordo di sovvenzione \u00e8 stato firmato per una durata di tre anni, con un bilancio UE di 11 milioni di euro.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per saperne di pi\u00f9 sul progetto, consulta il nostro <a href=\"https:\/\/ern-ithaca.eu\/it\/jardin-project-the-joint-action-on-integration-of-erns-into-national-healthcare-systems\/\">pagina web dedicata<\/a>. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/jardin-ern.eu\">https:\/\/jardin-ern.eu<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"587\" height=\"354\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERICACover-1-2.png\" alt=\"\" class=\"wp-image-6263\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>ERICA<\/strong> \u00e8 il <strong>Azione europea di coordinamento e sostegno alla ricerca sulle malattie rare<\/strong>&nbsp;consorzio. L\u2019obiettivo di questa organizzazione, alla quale partecipano tutte e 24 le Reti di riferimento europee (ERN), \u00e8 quello di valorizzare i punti di forza delle singole ERN e creare una piattaforma che integri tutte le capacit\u00e0 di ricerca e innovazione delle ERN. ERICA rafforzer\u00e0 le capacit\u00e0 di ricerca e innovazione attraverso l\u2019integrazione delle attivit\u00e0 di ricerca delle ERN e il coinvolgimento delle infrastrutture di ricerca europee, al fine di aumentare in modo sinergico l\u2019impatto e l\u2019innovazione. Ci\u00f2 si tradurr\u00e0 in un accesso efficiente e in terapie sicure a beneficio dei pazienti affetti da malattie rare e patologie complesse.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/erica-rd.eu\/\">ERICA | Azione europea di coordinamento e sostegno alla ricerca sulle malattie rare<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>The European Rare Diseases Research Alliance is a co-funded partnership between the European Commission, European Member States, and beyond. Taking over the European Joint Programme for Rare Diseases EJPRD, ERDERA&#8217; s general missions are to advance basic research and clinical applications, forster patient engagement and enabling important international collaborations. To see more about ERDERA partnership, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":17,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"template-pages\/template-page-navigation-submenu.php","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-52","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Our EU partnerships - ERN ITHACA<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ern-ithaca.eu\/it\/about-us\/our-eu-partnerships\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our EU partnerships - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"The European Rare Diseases Research Alliance is a co-funded partnership between the European Commission, European Member States, and beyond. Taking over the European Joint Programme for Rare Diseases EJPRD, ERDERA&#8217; s general missions are to advance basic research and clinical applications, forster patient engagement and enabling important international collaborations. 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