{"id":103231,"date":"2025-09-30T09:13:07","date_gmt":"2025-09-30T14:13:07","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=103231"},"modified":"2026-08-13T10:01:25","modified_gmt":"2026-08-13T15:01:25","slug":"samarbeid-om-forskning-pa-sjeldne-sykdommer-ecdga-pa-histiocyte-society-sitt-41-arsmote","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/uniting-for-rare-disease-research-ecdga-at-the-41st-histiocyte-society-annual-meeting\/","title":{"rendered":"Samarbeid om forskning p\u00e5 sjeldne sykdommer: ECDGA p\u00e5 Histiocyte Society sitt 41. \u00e5rsm\u00f8te"},"content":{"rendered":"<div id=\"attachment_174651\" 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-174651\" class=\"size-full wp-image-174651\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Schriner_Fitzgerald_Henson.jpg\" alt=\"Samarbeidsforskning p\u00e5 utstilling! Fra venstre til h\u00f8yre: Diane Schriner (ECDGA), Elise Fitzerald (medisinstudent ved UAB og frivillig i ECDGA) og Jerome Henson (ECDGA) diskuterer plakaten \u201cFilling an Unmet Need: A Review of the ECDGA Registry\u201d. ECDGA-kontaktregisteret bidrar til \u00e5 fremme datadrevet fremgang innen ECD-forskning og -behandling.\" width=\"1800\" height=\"1200\" 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-174651\" class=\"wp-caption-text\"><b>Felles forskning p\u00e5 utstilling! <\/b>Left to right: Diane Schriner (ECDGA), Elise Fitzerald (UAB Medical Student &amp; ECDGA Volunteer), Jerome Henson (ECDGA) discussing the poster, \u201cFilling an Unmet Need: A Review of the ECDGA Registry\u201d. The ECDGA contact registry helps drive data-informed progress in ECD research and care.<\/p><\/div>\n<p>Denne uken representerer ECDGA-president Diane Schriner, styremedlem Paul Hendrie, MD, og teammedlem Jerome Henson med stolthet <b>Den globale alliansen for Erdheim-Chester-syndromet<\/b> ved <b>Histiocyte Society sitt 41. \u00e5rsm\u00f8te<\/b>!<\/p>\n<p>Dette internasjonale m\u00f8tet samler leger og forskere som arbeider for \u00e5 fremme forst\u00e5elsen av og behandlingen av histiocytiske sykdommer \u2013 blant annet <b>Erdheim-Chester-syndromet (ECD)<\/b>, <b>Langerhans-cellehistiocytose (LCH)<\/b>, <b>Rosai-Dorfman-Destombes-syndromet (RDD)<\/b>, og <b>Hemofagocytisk lymfohistiocytose (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">ECDGA-teamet har fokus p\u00e5:<\/p>\n<ul>\n<li>\u00c5 fremme interessen for forskning innen tidlig barndomsutvikling<\/li>\n<li>Styrking av det globale samarbeidet med andre interesseorganisasjoner<\/li>\n<li>\u00c5 arbeide for etablering av nye barnehager over hele verden<\/li>\n<\/ul>\n<p>Det er inspirerende \u00e5 se at interessen for ECD \u00f8ker takket v\u00e6re alt arbeidet og st\u00f8tten fra ECD-fellesskapet.<\/p>\n<div id=\"attachment_174648\" 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-174648\" class=\"wp-image-174648 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Henson_Gotz_Schriner_DiGirolamo.jpg\" alt=\"\" width=\"1800\" height=\"1200\" \/><\/a><p id=\"caption-attachment-174648\" class=\"wp-caption-text\">Collaborative Conversations in Action! Left to right: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA \u2013 Canada), discussing the poster, \u201cGlobal Histio: The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis.\u201d This project highlights the power of international advocacy collaboration- of which ECDGA is a proud participant.<\/p><\/div>\n<div id=\"attachment_174654\" 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-174654\" class=\"wp-image-174654 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-174654\" class=\"wp-caption-text\">ECD Research Being Shared! Left to right: Jerome Henson (ECDGA), Laura Eurelings, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), discussing the poster, \u201cAnti-IL-6 Therapy in Erdheim-Chester Disease.\u201d Conversations like these help drive forward the scientific understanding of ECD.<\/p><\/div>\n<div id=\"attachment_174674\" 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-174674\" class=\"wp-image-174674 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-174674\" class=\"wp-caption-text\">Raising Awareness of ECDGA Programs! Diane Schriner at the ECDGA informational table, sharing details about the ECDGA\u2019s support programs\u2014including our growing network of ECD Referral Care Centers around the world.<\/p><\/div>\n<div id=\"attachment_174676\" 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-174676\" class=\"wp-image-174676 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-174676\" class=\"wp-caption-text\">International Collaboration in Action! Left to eight: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children\u2019s University Hospital, Italy). Cross-border partnerships are essential in advancing the understanding of Erdheim-Chester Disease.<\/p><\/div>\n<div id=\"attachment_174677\" 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-174677\" class=\"wp-image-174677 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-174677\" class=\"wp-caption-text\">Insight from the ECDGA Medical Advisory Board! Left to right: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester), and Jerome Henson (ECDGA) discuss care strategies and research priorities. Dr. Go is a valued member of the ECDGA Medical Advisory Board.<\/p><\/div>","protected":false},"excerpt":{"rendered":"<p>This week, ECDGA President Diane Schriner, Board Member Paul Hendrie, MD, and team member Jerome Henson are proudly representing the Erdheim-Chester Disease Global Alliance at the 41st Annual Meeting of [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":174658,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[375,387,374,4871,3292,3733,2601],"class_list":["post-103231","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ecdawareness","tag-ecdga","tag-erdheimchesterdisease","tag-globalhistiocytosis","tag-patientadvocacy","tag-rarebutpowerful","tag-rarediseaseadvocacy"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/103231","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=103231"}],"version-history":[{"count":5,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/103231\/revisions"}],"predecessor-version":[{"id":174679,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/103231\/revisions\/174679"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/174658"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=103231"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=103231"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=103231"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}