{"id":103240,"date":"2025-09-30T09:13:07","date_gmt":"2025-09-30T14:13:07","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/forening-for-forskning-pa-sjeldne-sykdommer-ecdga-pa-det-41-arsmotet-i-histiocyte-society\/"},"modified":"2025-12-02T12:15:42","modified_gmt":"2025-12-02T18:15:42","slug":"forening-for-forskning-pa-sjeldne-sykdommer-ecdga-pa-det-41-arsmotet-i-histiocyte-society","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/no\/forening-for-forskning-pa-sjeldne-sykdommer-ecdga-pa-det-41-arsmotet-i-histiocyte-society\/","title":{"rendered":"Forening for forskning p\u00e5 sjeldne sykdommer: ECDGA p\u00e5 det 41. \u00e5rsm\u00f8tet i Histiocyte Society"},"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=\"Forskningssamarbeid p\u00e5 utstilling! Fra venstre til h\u00f8yre: Diane Schriner (ECDGA), Elise Fitzerald (medisinstudent ved UAB og frivillig i ECDGA), Jerome Henson (ECDGA) diskuterer posteren \"Filling an Unmet Need: En gjennomgang av ECDGA-registeret\". ECDGA-kontaktregisteret bidrar til datainformerte fremskritt innen forskning og behandling av ECD.\" 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>Forskningssamarbeid p\u00e5 utstilling!  <\/b>Fra venstre til h\u00f8yre: Diane Schriner (ECDGA), Elise Fitzerald (medisinstudent ved UAB og frivillig i ECDGA), Jerome Henson (ECDGA) diskuterer posteren &laquo;Filling an Unmet Need: En gjennomgang av ECDGA-registeret&raquo;. ECDGA-kontaktregisteret bidrar til datainformerte fremskritt innen forskning og behandling av ECD.<\/p><\/div>\n<p>Denne uken er ECDGAs president Diane Schriner, styremedlem Paul Hendrie, MD, og teammedlem Jerome Henson stolte av \u00e5 representere <b>Erdheim-Chester Disease Global Alliance<\/b> p\u00e5 det <b>41. \u00e5rlige m\u00f8tet i Histiocyte Society<\/b>!<\/p>\n<p>Dette internasjonale m\u00f8tet samler leger og forskere som arbeider for \u00e5 fremme forst\u00e5elsen og behandlingen av histiocyt\u00e6re sykdommer &#8211; inkludert <b>Erdheim-Chesters sykdom (ECD)<\/b>, <b>Langerhans cellehistiocytose (LCH)<\/b>, <b>Rosai-Dorfman-Destombes sykdom (RDD)<\/b> og <b>hemofagocytisk lymfohistiocytose (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">ECDGA-teamet er fokusert p\u00e5<\/p>\n<ul>\n<li>Fremme forskningsinteressen for ECD<\/li>\n<li>Styrke det globale samarbeidet med andre interesseorganisasjoner<\/li>\n<li>Arbeide for utvikling av nye ECD-sentre rundt om i verden<\/li>\n<\/ul>\n<p>Det er inspirerende \u00e5 se hvordan ECD vokser takket v\u00e6re alt arbeidet og all st\u00f8tten fra ECD-fellesskapet.<\/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>Samarbeidssamtaler i praksis!  <\/b>Fra venstre til h\u00f8yre: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA &#8211; Canada), som diskuterer posteren &laquo;Global Histio: The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis&raquo;. Dette prosjektet fremhever styrken i internasjonalt samarbeid om pasientforkjempelse &#8211; som ECDGA er en stolt deltaker i.<\/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>ECD-forskning blir delt!<\/b>  Fra venstre til h\u00f8yre: Jerome Henson (ECDGA), Laura Erdheim, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), diskuterer posteren &laquo;Anti-IL-6 Therapy in Erdheim-Chester Disease&raquo;. Samtaler som dette bidrar til \u00e5 drive den vitenskapelige forst\u00e5elsen av ECD fremover.<\/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>\u00d8ker bevisstheten om ECDGA-programmene!  <\/b>Diane Schriner ved ECDGAs informasjonsbord, hvor hun delte informasjon om ECDGAs st\u00f8tteprogrammer &#8211; inkludert v\u00e5rt voksende nettverk av ECD Referral Care Centers rundt om i verden.<\/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>Internasjonalt samarbeid i praksis!  <\/b>Fra venstre til \u00e5tte: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children&#8217;s University Hospital, Italia). Partnerskap p\u00e5 tvers av landegrensene er avgj\u00f8rende for \u00e5 fremme forst\u00e5elsen av Erdheim-Chesters sykdom.<\/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>Innsikt fra ECDGAs medisinske r\u00e5dgivende utvalg!  <\/b>Fra venstre til h\u00f8yre: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester) og Jerome Henson (ECDGA) diskuterer behandlingsstrategier og forskningsprioriteringer. Dr. Go er et verdsatt medlem av ECDGAs Medical Advisory Board.<\/p><\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Denne uken er ECDGAs president Diane Schriner, styremedlem Paul Hendrie, MD, og teammedlem Jerome Henson stolte av \u00e5 representere Erdheim-Chester Disease Global Alliance p\u00e5 det 41. \u00e5rlige m\u00f8tet i Histiocyte [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":103279,"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":[418],"tags":[443,455,442,2646,4877,3340,3773],"class_list":["post-103240","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-nyheter","tag-ecd-bevissthet","tag-ecdga-no","tag-erdheimchestersykdom","tag-foreningen-for-sjeldne-sykdommer","tag-globalhistiocytose","tag-pasientmedvirkning","tag-sjeldenmenmektig"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/103240","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=103240"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/103240\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/103279"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=103240"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=103240"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=103240"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}