{"id":103241,"date":"2025-09-30T09:13:07","date_gmt":"2025-09-30T14:13:07","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/sunir-pour-la-recherche-sur-les-maladies-rares-ecdga-a-la-41e-reunion-annuelle-de-la-histiocyte-society\/"},"modified":"2025-12-02T12:16:31","modified_gmt":"2025-12-02T18:16:31","slug":"sunir-pour-la-recherche-sur-les-maladies-rares-ecdga-a-la-41e-reunion-annuelle-de-la-histiocyte-society","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/sunir-pour-la-recherche-sur-les-maladies-rares-ecdga-a-la-41e-reunion-annuelle-de-la-histiocyte-society\/","title":{"rendered":"S&rsquo;unir pour la recherche sur les maladies rares : ECDGA \u00e0 la 41e r\u00e9union annuelle de la 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=\"La recherche collaborative \u00e0 l'honneur ! De gauche \u00e0 droite : Diane Schriner (ECDGA), Elise Fitzerald (\u00e9tudiante en m\u00e9decine \u00e0 l'UAB et b\u00e9n\u00e9vole \u00e0 l'ECDGA), Jerome Henson (ECDGA) discutant du poster \"Filling an Unmet Need : A Review of the ECDGA Registry\". Le registre des contacts de l'ECDGA contribue \u00e0 faire progresser, sur la base de donn\u00e9es, la recherche et les soins dans le domaine de l'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>La recherche collaborative \u00e0 l&rsquo;honneur !  <\/b>De gauche \u00e0 droite : Diane Schriner (ECDGA), Elise Fitzerald (\u00e9tudiante en m\u00e9decine \u00e0 l&rsquo;UAB et b\u00e9n\u00e9vole \u00e0 l&rsquo;ECDGA), Jerome Henson (ECDGA) discutant du poster \u00ab\u00a0Filling an Unmet Need : A Review of the ECDGA Registry\u00a0\u00bb. Le registre des contacts de l&rsquo;ECDGA contribue \u00e0 faire progresser, sur la base de donn\u00e9es, la recherche et les soins dans le domaine de l&rsquo;ECD.<\/p><\/div>\n<p>Cette semaine, la pr\u00e9sidente de l&rsquo;ECDGA, Diane Schriner, le membre du conseil d&rsquo;administration, Paul Hendrie, MD, et le membre de l&rsquo;\u00e9quipe, Jerome Henson, repr\u00e9sentent fi\u00e8rement l&rsquo;<b>Alliance mondiale pour la maladie d&rsquo;Erdheim-Chester<\/b> lors de la <b>41e r\u00e9union annuelle de la Soci\u00e9t\u00e9 des Histiocytes<\/b>!<\/p>\n<p>Cette r\u00e9union internationale rassemble des m\u00e9decins et des scientifiques qui se consacrent \u00e0 la compr\u00e9hension et au traitement des maladies histiocytaires, notamment la <b>maladie d&rsquo;Erdheim-Chester (ECD)<\/b>, l&rsquo;<b>histiocytose \u00e0 cellules de Langerhans (HCL<\/b>), la <b>maladie de Rosai-Dorfman-Destombes (RDD)<\/b> et la <b>lympho-histiocytose h\u00e9mophagocytaire (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">L&rsquo;\u00e9quipe de l&rsquo;ECDGA se concentre sur :<\/p>\n<ul>\n<li>Promouvoir l&rsquo;int\u00e9r\u00eat de la recherche pour le ECD<\/li>\n<li>Renforcer la collaboration mondiale avec les autres groupes de pression<\/li>\n<li>Plaidoyer pour le d\u00e9veloppement de nouveaux centres de soins ECD dans le monde entier<\/li>\n<\/ul>\n<p>Il est encourageant de voir l&rsquo;\u00e9lan se d\u00e9velopper autour du ECD gr\u00e2ce au travail et au soutien de la communaut\u00e9 du 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>Les conversations collaboratives en action !  <\/b>De gauche \u00e0 droite : Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA &#8211; Canada), discutant du poster \u00ab\u00a0Global Histio : The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis\u00a0\u00bb. Ce projet met en \u00e9vidence la puissance de la collaboration internationale en mati\u00e8re de plaidoyer &#8211; dont l&rsquo;ECDGA est un fier participant.<\/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 recherche sur le ECD est en train d&rsquo;\u00eatre partag\u00e9e !<\/b>  De gauche \u00e0 droite : Jerome Chester (ECDGA), Laura Eurelings, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), discutant du poster \u00ab\u00a0Anti-IL-6 Therapy in Erdheim-Chester Disease\u00a0\u00bb. Des conversations comme celles-ci permettent de faire avancer la compr\u00e9hension scientifique de l&rsquo;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>Sensibilisation aux programmes de l&rsquo;ECDGA !  <\/b>Diane Schriner \u00e0 la table d&rsquo;information de l&rsquo;ECDGA, partageant des d\u00e9tails sur les programmes de soutien de l&rsquo;ECDGA &#8211; y compris notre r\u00e9seau croissant de centres de soins de r\u00e9f\u00e9rence pour le ECD dans le monde entier.<\/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>La collaboration internationale en action !  <\/b>De gauche \u00e0 droite : Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (H\u00f4pital universitaire Meyer pour enfants, Italie). Les partenariats transfrontaliers sont essentiels pour faire progresser la compr\u00e9hension de la maladie d&rsquo;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>L&rsquo;avis du comit\u00e9 consultatif m\u00e9dical de l&rsquo;ECDGA !  <\/b>De gauche \u00e0 droite : Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester), et Jerome Henson (ECDGA) discutent des strat\u00e9gies de soins et des priorit\u00e9s de recherche. Le Dr Go est un membre appr\u00e9ci\u00e9 du comit\u00e9 consultatif m\u00e9dical de l&rsquo;ECDGA.<\/p><\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Cette semaine, la pr\u00e9sidente de l&rsquo;ECDGA, Diane Schriner, le membre du conseil d&rsquo;administration, Paul Hendrie, MD, et le membre de l&rsquo;\u00e9quipe, Jerome Henson, repr\u00e9sentent fi\u00e8rement l&rsquo;Alliance mondiale pour la maladie [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":103273,"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":[426],"tags":[2626,3424,575,4878,562,3807,563],"class_list":["post-103241","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-actualites","tag-defense-des-maladies-rares","tag-defense-des-patients","tag-ecdga-fr","tag-histiocytose-mondiale","tag-maladie-derdheimchester","tag-raremaispuissant","tag-sensibilisation-au-dpe"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/103241","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=103241"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/103241\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/103273"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=103241"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=103241"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=103241"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}