{"id":103242,"date":"2025-09-30T09:13:07","date_gmt":"2025-09-30T14:13:07","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/uniti-per-la-ricerca-sulle-malattie-rare-lecdga-al-41-incontro-annuale-della-societa-degli-istiociti\/"},"modified":"2025-12-02T12:15:43","modified_gmt":"2025-12-02T18:15:43","slug":"uniti-per-la-ricerca-sulle-malattie-rare-lecdga-al-41-incontro-annuale-della-societa-degli-istiociti","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/uniti-per-la-ricerca-sulle-malattie-rare-lecdga-al-41-incontro-annuale-della-societa-degli-istiociti\/","title":{"rendered":"Uniti per la ricerca sulle malattie rare: L&#8217;ECDGA al 41\u00b0 incontro annuale della Societ\u00e0 degli Istiociti"},"content":{"rendered":"<div id=\"attachment_103270\" style=\"width: 1810px\" class=\"wp-caption alignnone\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-103270\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson.jpg\" alt=\"La ricerca collaborativa in mostra! Da sinistra a destra: Diane Schriner (ECDGA), Elise Fitzerald (studentessa di medicina UAB e volontaria ECDGA), Jerome Henson (ECDGA) discutono il poster \"Filling an Unmet Need: Una revisione del registro ECDGA\". Il registro dei contatti dell'ECDGA contribuisce a far progredire la ricerca e la cura dell'ECD sulla base dei dati.\" width=\"1800\" height=\"1200\" class=\"size-full wp-image-103270\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson.jpg 1800w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson-1280x853.jpg 1280w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson-980x653.jpg 980w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson-480x320.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1800px, 100vw\" \/><\/a><p id=\"caption-attachment-103270\" class=\"wp-caption-text\"><b>Ricerca collaborativa in mostra!  <\/b>Da sinistra a destra: Diane Schriner (ECDGA), Elise Fitzerald (studentessa di medicina UAB e volontaria ECDGA), Jerome Henson (ECDGA) discutono il poster &#8220;Filling an Unmet Need: Una revisione del registro ECDGA&#8221;. Il registro dei contatti dell&#8217;ECDGA contribuisce a far progredire la ricerca e la cura dell&#8217;ECD sulla base dei dati.<\/p><\/div>\n<p>Questa settimana, la Presidente dell&#8217;ECDGA Diane Schriner, il membro del Consiglio di Amministrazione Paul Hendrie, MD, e il membro del team Jerome Henson sono orgogliosi di rappresentare l&#8217;<b>Erdheim-Chester Disease Global Alliance<\/b> al <b>41\u00b0 Meeting annuale della Histiocyte Society<\/b>!<\/p>\n<p>Questo incontro internazionale riunisce medici e scienziati che si dedicano al progresso della comprensione e del trattamento delle malattie istiocitiche, tra cui la <b>malattia di Erdheim-Chester (ECD)<\/b>, <b>l<\/b>&#8216;<b>istiocitosi a cellule di Langerhans (LCH)<\/b>, la <b>malattia di Rosai-Dorfman-Destombes (RDD)<\/b> e la <b>linfoistiocitosi emofagocitica (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">Il team ECDGA si concentra su:<\/p>\n<ul>\n<li>Promuovere l&#8217;interesse della ricerca sull&#8217;ECD<\/li>\n<li>Rafforzare la collaborazione globale con altri gruppi di advocacy<\/li>\n<li>Promuovere lo sviluppo di nuovi centri ECD in tutto il mondo.<\/li>\n<\/ul>\n<p>\u00c8 stimolante vedere lo slancio che sta crescendo intorno all&#8217;ECD grazie al lavoro e al sostegno della comunit\u00e0 ECD.<\/p>\n<div id=\"attachment_103294\" style=\"width: 1810px\" class=\"wp-caption alignnone\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-103294\" class=\"wp-image-103294 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo.jpg\" alt=\"\" width=\"1800\" height=\"1200\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo.jpg 1800w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo-1280x853.jpg 1280w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo-980x653.jpg 980w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo-480x320.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1800px, 100vw\" \/><\/a><p id=\"caption-attachment-103294\" class=\"wp-caption-text\"><b>Conversazioni collaborative in azione!  <\/b>Da sinistra a destra: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA &#8211; Canada), discutono il poster &#8220;Global Histio: La coalizione internazionale dei gruppi di difesa dei pazienti per la collaborazione nell&#8217;istiocitosi&#8221;. Questo progetto evidenzia il potere della collaborazione internazionale in materia di advocacy, di cui l&#8217;ECDGA \u00e8 un orgoglioso partecipante.<\/p><\/div>\n<p>&nbsp;<\/p>\n<div id=\"attachment_103306\" style=\"width: 1810px\" class=\"wp-caption alignnone\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Eurelings_Schriner.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-103306\" class=\"wp-image-103306 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Eurelings_Schriner.jpg\" alt=\"\" width=\"1800\" height=\"1200\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Eurelings_Schriner.jpg 1800w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Eurelings_Schriner-1280x853.jpg 1280w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Eurelings_Schriner-980x653.jpg 980w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Eurelings_Schriner-480x320.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1800px, 100vw\" \/><\/a><p id=\"caption-attachment-103306\" class=\"wp-caption-text\"><b>La ricerca ECD viene condivisa!<\/b>  Da sinistra a destra: Jerome Henson (ECDGA), Laura Eurelings, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), discutono il poster &#8220;Anti-IL-6 Therapy in Erdheim-Chester Disease&#8221;. Conversazioni come queste aiutano a far progredire la comprensione scientifica dell&#8217;ECD.<\/p><\/div>\n<p>&nbsp;<\/p>\n<div id=\"attachment_103318\" style=\"width: 1810px\" class=\"wp-caption alignnone\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Diane_booth.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-103318\" class=\"wp-image-103318 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Diane_booth.jpg\" alt=\"\" width=\"1800\" height=\"1200\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Diane_booth.jpg 1800w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Diane_booth-1280x853.jpg 1280w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Diane_booth-980x653.jpg 980w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Diane_booth-480x320.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1800px, 100vw\" \/><\/a><p id=\"caption-attachment-103318\" class=\"wp-caption-text\"><b>Aumenta la consapevolezza dei programmi ECDGA!  <\/b>Diane Schriner al tavolo informativo dell&#8217;ECDGA, che ha condiviso i dettagli dei programmi di supporto dell&#8217;ECDGA, tra cui la nostra crescente rete di Centri di assistenza ECD di riferimento in tutto il mondo.<\/p><\/div>\n<p>&nbsp;<\/p>\n<div id=\"attachment_103330\" style=\"width: 1810px\" class=\"wp-caption alignnone\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Schriner_Pegararo.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-103330\" class=\"wp-image-103330 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Schriner_Pegararo.jpg\" alt=\"\" width=\"1800\" height=\"1200\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Schriner_Pegararo.jpg 1800w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Schriner_Pegararo-1280x853.jpg 1280w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Schriner_Pegararo-980x653.jpg 980w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Schriner_Pegararo-480x320.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1800px, 100vw\" \/><\/a><p id=\"caption-attachment-103330\" class=\"wp-caption-text\"><b>Collaborazione internazionale in azione!  <\/b>Da sinistra a otto: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Ospedale Universitario Pediatrico Meyer, Italia). Le collaborazioni transfrontaliere sono essenziali per far progredire la comprensione della malattia di Erdheim-Chester.<\/p><\/div>\n<p>&nbsp;<\/p>\n<div id=\"attachment_103342\" style=\"width: 1810px\" class=\"wp-caption alignnone\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Go_Henson.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-103342\" class=\"wp-image-103342 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Go_Henson.jpg\" alt=\"\" width=\"1800\" height=\"1200\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Go_Henson.jpg 1800w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Go_Henson-1280x853.jpg 1280w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Go_Henson-980x653.jpg 980w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Go_Henson-480x320.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1800px, 100vw\" \/><\/a><p id=\"caption-attachment-103342\" class=\"wp-caption-text\"><b>Le opinioni del comitato consultivo medico dell&#8217;ECDGA!  <\/b>Da sinistra a destra: Diane Schriner (ECDGA), il Dr. Ronald Go (Mayo Clinic, Rochester) e Jerome Henson (ECDGA) discutono delle strategie di cura e delle priorit\u00e0 di ricerca. Il Dr. Go \u00e8 un apprezzato membro del Consiglio di consulenza medica dell&#8217;ECDGA.<\/p><\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Questa settimana, la Presidente dell&#8217;ECDGA Diane Schriner, il membro del Consiglio di Amministrazione Paul Hendrie, MD, e il membro del team Jerome Henson sono orgogliosi di rappresentare l&#8217;Erdheim-Chester Disease Global [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":103278,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[419],"tags":[458,470,4879,457,2651,3352,3792],"class_list":["post-103242","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-notizie","tag-consapevolezza-ecd","tag-ecdga-it","tag-istiocitosi-globale","tag-malattia-di-erdheimchester","tag-malattie-rareavvocati","tag-pazienteavvocato","tag-raromapotente-it"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/103242","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=103242"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/103242\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/103278"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=103242"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=103242"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=103242"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}