{"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":"unis-pour-la-recherche-sur-les-maladies-rares-lecdga-a-la-41e-reunion-annuelle-de-lhistiocyte-society","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/uniting-for-rare-disease-research-ecdga-at-the-41st-histiocyte-society-annual-meeting\/","title":{"rendered":"Ensemble pour la recherche sur les maladies rares : l'ECDGA au 41e congr\u00e8s annuel de la Histiocyte Society"},"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=\"La recherche collaborative \u00e0 l&#039;honneur ! De gauche \u00e0 droite : Diane Schriner (ECDGA), Elise Fitzerald (\u00e9tudiante en m\u00e9decine \u00e0 l&#039;UAB et b\u00e9n\u00e9vole \u00e0 l&#039;ECDGA) et J\u00e9r\u00f4me Henson (ECDGA) discutent de l&#039;affiche intitul\u00e9e \u201c R\u00e9pondre \u00e0 un besoin non satisfait : une analyse du registre de l&#039;ECDGA \u201d. Le registre de contacts de l\u2019ECDGA contribue \u00e0 faire progresser la recherche et les soins en mati\u00e8re de d\u00e9veloppement de la petite enfance gr\u00e2ce \u00e0 des donn\u00e9es fiables.\" 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>La recherche collaborative \u00e0 l'honneur ! <\/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>Cette semaine, Diane Schriner, pr\u00e9sidente de l'ECDGA, Paul Hendrie, membre du conseil d'administration et m\u00e9decin, ainsi que J\u00e9r\u00f4me Henson, membre de l'\u00e9quipe, repr\u00e9sentent fi\u00e8rement l' <b>Alliance Mondiale contre la Maladie d'Erdheim-Chester<\/b> \u00e0 la <b>41e r\u00e9union annuelle de la Histiocyte Society<\/b>!<\/p>\n<p>Ce congr\u00e8s international rassemble des m\u00e9decins et des chercheurs qui se consacrent \u00e0 l'am\u00e9lioration de la compr\u00e9hension et du traitement des troubles histiocytaires, notamment <b>Maladie d'Erdheim-Chester (ECD)<\/b>, <b>Histiocytose \u00e0 cellules de Langerhans (HCL)<\/b>, <b>Maladie de Rosai-Dorfman-Destombes (RDD)<\/b>, et <b>Lymphohistiocytose h\u00e9mophagocytaire (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">L'\u00e9quipe de l'ECDGA se concentre sur :<\/p>\n<ul>\n<li>Promouvoir l'int\u00e9r\u00eat pour la recherche dans le domaine du d\u00e9veloppement de la petite enfance<\/li>\n<li>Renforcer la collaboration internationale avec d'autres associations de d\u00e9fense des droits<\/li>\n<li>Promouvoir la cr\u00e9ation de nouveaux centres de prise en charge de la petite enfance \u00e0 travers le monde<\/li>\n<\/ul>\n<p>C'est une source d'inspiration de voir l'engouement pour l'ECD prendre de l'ampleur gr\u00e2ce \u00e0 tout le travail et au soutien de la communaut\u00e9 ECD.<\/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\/fr\/wp-json\/wp\/v2\/posts\/103231","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=103231"}],"version-history":[{"count":5,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/103231\/revisions"}],"predecessor-version":[{"id":174679,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/103231\/revisions\/174679"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/174658"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=103231"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=103231"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=103231"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}