{"id":4495,"date":"2025-05-06T09:13:13","date_gmt":"2025-05-06T09:13:13","guid":{"rendered":"https:\/\/benzifoundation.org\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/"},"modified":"2025-05-06T09:13:13","modified_gmt":"2025-05-06T09:13:13","slug":"training-erdera-per-giovani-sostenitori-delle-malattie-rare","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/","title":{"rendered":"Training ERDERA per giovani sostenitori delle malattie rare"},"content":{"rendered":"<p>Il 2 e 3 maggio 2025, la Dott.ssa Silvia Torretta della Fondazione Gianni Benzi ha partecipato come relatrice all\u2019Evento di Formazione sulla Ricerca Clinica Pediatrica per Giovani con Malattie Rare, organizzato da <span data-contrast=\"auto\"><a href=\"https:\/\/www.teddynetwork.net\/\" target=\"_blank\" rel=\"noopener\">TEDDY Network<\/a><\/span> nell\u2019ambito del progetto <a href=\"\/?p=17926\" target=\"_blank\" rel=\"noopener\">ERDERA <\/a>.<br \/>L\u2019obiettivo della formazione era sensibilizzare i giovani rappresentanti dei pazienti sui propri diritti nelle decisioni riguardanti la salute, oltre a fornire loro le conoscenze necessarie per orientarsi nel complesso panorama delle malattie rare.<span data-ccp-props=\"{}\"> <\/span><\/p>\n<p>La Dott.ssa Torretta \u00e8 intervenuta in due sessioni &#8211; Diritti dei pazienti e dei bambini e Coinvolgimento dei pazienti negli studi clinici &#8211; trattando temi chiave come:<span data-ccp-props=\"{}\"> <\/span><\/p>\n<ul>\n<li> Aspetti legali ed etici nella ricerca pediatrica: spiegando la necessit\u00e0 di regole chiare e requisiti etici per condurre la ricerca clinica in modo equo e sicuro, in particolare quando coinvolge i pi\u00f9 giovani.<br \/>\nConsenso\/assenso, protocollo di studio e sintesi in linguaggio semplice: un focus sulle procedure di consenso e assenso, la loro importanza nella tutela dei diritti dei pazienti, e una panoramica delle fasi principali nella conduzione degli studi clinici e dei documenti essenziali di supporto.<\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">L\u2019evento ha visto la partecipazione entusiasta di giovani rappresentanti provenienti da diverse organizzazioni internazionali, tra cui KIDS Bari e KIDS Umbria (Italia), KIDS Albania, RAIN Ireland, eyeYPAG (Regno Unito), ANDO Portugal e KIDS Rare Hellas (Grecia).<\/span><br \/>\n<span data-contrast=\"auto\">La loro partecipazione ha sottolineato l\u2019importanza fondamentale di includere le voci dei giovani nella definizione di una ricerca clinica etica e inclusiva.<\/span><span data-ccp-props=\"{}\"> <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Il 2 e 3 maggio 2025, la Dott.ssa Silvia Torretta della Fondazione Gianni Benzi ha partecipato come relatrice all\u2019Evento di Formazione sulla Ricerca Clinica Pediatrica per Giovani con Malattie Rare, organizzato da TEDDY Network nell\u2019ambito del progetto ERDERA .L\u2019obiettivo della formazione era sensibilizzare i giovani rappresentanti dei pazienti sui propri diritti nelle decisioni riguardanti la [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4494,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[224,197,213],"tags":[223],"class_list":["post-4495","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aggiornamenti-dai-progetti","category-erdera","category-eventi","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>Training ERDERA per giovani sostenitori delle malattie rare - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"Fondazione Gianni Benzi to join ERDERA training in Athens on May 2\u20133, focusing on pediatric rare disease research and ethics.\" \/>\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\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Training ERDERA per giovani sostenitori delle malattie rare - Fondazione Gianni Benzi - ETS\" \/>\n<meta property=\"og:description\" content=\"Fondazione Gianni Benzi to join ERDERA training in Athens on May 2\u20133, focusing on pediatric rare disease research and ethics.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/\" \/>\n<meta property=\"og:site_name\" content=\"Fondazione Gianni Benzi - ETS\" \/>\n<meta property=\"article:published_time\" content=\"2025-05-06T09:13:13+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"1000\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Scritto da\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tempo di lettura stimato\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/#\\\/schema\\\/person\\\/b927dbd45f2d82849380299ff732c266\"},\"headline\":\"Training ERDERA per giovani sostenitori delle malattie rare\",\"datePublished\":\"2025-05-06T09:13:13+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/\"},\"wordCount\":244,\"commentCount\":0,\"image\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/benzifoundation.org\\\/wp-content\\\/uploads\\\/2026\\\/01\\\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg\",\"keywords\":[\"malattie rare\"],\"articleSection\":[\"Aggiornamenti dai progetti\",\"ERDERA\",\"Eventi\"],\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/\",\"url\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/\",\"name\":\"Training ERDERA per giovani sostenitori delle malattie rare - Fondazione Gianni Benzi - ETS\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/benzifoundation.org\\\/wp-content\\\/uploads\\\/2026\\\/01\\\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg\",\"datePublished\":\"2025-05-06T09:13:13+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/#\\\/schema\\\/person\\\/b927dbd45f2d82849380299ff732c266\"},\"description\":\"Fondazione Gianni Benzi to join ERDERA training in Athens on May 2\u20133, focusing on pediatric rare disease research and ethics.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#breadcrumb\"},\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#primaryimage\",\"url\":\"https:\\\/\\\/benzifoundation.org\\\/wp-content\\\/uploads\\\/2026\\\/01\\\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg\",\"contentUrl\":\"https:\\\/\\\/benzifoundation.org\\\/wp-content\\\/uploads\\\/2026\\\/01\\\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg\",\"width\":1200,\"height\":1000},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Training ERDERA per giovani sostenitori delle malattie rare\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/#website\",\"url\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/\",\"name\":\"Fondazione Gianni Benzi - ETS\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"it-IT\"},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/#\\\/schema\\\/person\\\/b927dbd45f2d82849380299ff732c266\",\"name\":\"admin\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/b53d43f1aaeceec75df4938b3e2a7ffb4ca7517db228bbe25ca85e468bfa6e26?s=96&d=mm&r=g\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/b53d43f1aaeceec75df4938b3e2a7ffb4ca7517db228bbe25ca85e468bfa6e26?s=96&d=mm&r=g\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/b53d43f1aaeceec75df4938b3e2a7ffb4ca7517db228bbe25ca85e468bfa6e26?s=96&d=mm&r=g\",\"caption\":\"admin\"},\"sameAs\":[\"https:\\\/\\\/benzifoundation.org\"],\"url\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/author\\\/admin\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Training ERDERA per giovani sostenitori delle malattie rare - Fondazione Gianni Benzi - ETS","description":"Fondazione Gianni Benzi to join ERDERA training in Athens on May 2\u20133, focusing on pediatric rare disease research and ethics.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/","og_locale":"it_IT","og_type":"article","og_title":"Training ERDERA per giovani sostenitori delle malattie rare - Fondazione Gianni Benzi - ETS","og_description":"Fondazione Gianni Benzi to join ERDERA training in Athens on May 2\u20133, focusing on pediatric rare disease research and ethics.","og_url":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/","og_site_name":"Fondazione Gianni Benzi - ETS","article_published_time":"2025-05-06T09:13:13+00:00","og_image":[{"width":1200,"height":1000,"url":"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg","type":"image\/jpeg"}],"author":"admin","twitter_card":"summary_large_image","twitter_misc":{"Scritto da":"admin","Tempo di lettura stimato":"1 minuto"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#article","isPartOf":{"@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/"},"author":{"name":"admin","@id":"https:\/\/benzifoundation.org\/it\/#\/schema\/person\/b927dbd45f2d82849380299ff732c266"},"headline":"Training ERDERA per giovani sostenitori delle malattie rare","datePublished":"2025-05-06T09:13:13+00:00","mainEntityOfPage":{"@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/"},"wordCount":244,"commentCount":0,"image":{"@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#primaryimage"},"thumbnailUrl":"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg","keywords":["malattie rare"],"articleSection":["Aggiornamenti dai progetti","ERDERA","Eventi"],"inLanguage":"it-IT","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/","url":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/","name":"Training ERDERA per giovani sostenitori delle malattie rare - Fondazione Gianni Benzi - ETS","isPartOf":{"@id":"https:\/\/benzifoundation.org\/it\/#website"},"primaryImageOfPage":{"@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#primaryimage"},"image":{"@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#primaryimage"},"thumbnailUrl":"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg","datePublished":"2025-05-06T09:13:13+00:00","author":{"@id":"https:\/\/benzifoundation.org\/it\/#\/schema\/person\/b927dbd45f2d82849380299ff732c266"},"description":"Fondazione Gianni Benzi to join ERDERA training in Athens on May 2\u20133, focusing on pediatric rare disease research and ethics.","breadcrumb":{"@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#breadcrumb"},"inLanguage":"it-IT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/"]}]},{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#primaryimage","url":"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg","contentUrl":"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/ERDERA-training-for-young-advocates-for-rare-diseases.jpg","width":1200,"height":1000},{"@type":"BreadcrumbList","@id":"https:\/\/benzifoundation.org\/it\/training-erdera-per-giovani-sostenitori-delle-malattie-rare\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/benzifoundation.org\/it\/"},{"@type":"ListItem","position":2,"name":"Training ERDERA per giovani sostenitori delle malattie rare"}]},{"@type":"WebSite","@id":"https:\/\/benzifoundation.org\/it\/#website","url":"https:\/\/benzifoundation.org\/it\/","name":"Fondazione Gianni Benzi - ETS","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/benzifoundation.org\/it\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"it-IT"},{"@type":"Person","@id":"https:\/\/benzifoundation.org\/it\/#\/schema\/person\/b927dbd45f2d82849380299ff732c266","name":"admin","image":{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/secure.gravatar.com\/avatar\/b53d43f1aaeceec75df4938b3e2a7ffb4ca7517db228bbe25ca85e468bfa6e26?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/b53d43f1aaeceec75df4938b3e2a7ffb4ca7517db228bbe25ca85e468bfa6e26?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/b53d43f1aaeceec75df4938b3e2a7ffb4ca7517db228bbe25ca85e468bfa6e26?s=96&d=mm&r=g","caption":"admin"},"sameAs":["https:\/\/benzifoundation.org"],"url":"https:\/\/benzifoundation.org\/it\/author\/admin\/"}]}},"_links":{"self":[{"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/posts\/4495","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/comments?post=4495"}],"version-history":[{"count":0,"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/posts\/4495\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/media\/4494"}],"wp:attachment":[{"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/media?parent=4495"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/categories?post=4495"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/benzifoundation.org\/it\/wp-json\/wp\/v2\/tags?post=4495"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}