{"id":103243,"date":"2025-09-30T09:13:07","date_gmt":"2025-09-30T14:13:07","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/samenkomen-voor-onderzoek-naar-zeldzame-ziekten-ecdga-op-de-41e-jaarlijkse-bijeenkomst-van-de-histiocyte-society\/"},"modified":"2025-12-02T12:15:43","modified_gmt":"2025-12-02T18:15:43","slug":"samenkomen-voor-onderzoek-naar-zeldzame-ziekten-ecdga-op-de-41e-jaarlijkse-bijeenkomst-van-de-histiocyte-society","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nl\/samenkomen-voor-onderzoek-naar-zeldzame-ziekten-ecdga-op-de-41e-jaarlijkse-bijeenkomst-van-de-histiocyte-society\/","title":{"rendered":"Samenkomen voor onderzoek naar zeldzame ziekten: ECDGA op de 41e jaarlijkse bijeenkomst van de 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=\"Onderzoek in samenwerking tentoongesteld! Van links naar rechts: Diane Schriner (ECDGA), Elise Fitzerald (UAB Medical Student &amp; ECDGA Volunteer), Jerome Henson (ECDGA) bespreken de poster, \"Filling an Unmet Need: Een overzicht van het ECDGA-register\". De ECDGA-registratie van contactpersonen helpt om op basis van gegevens vooruitgang te boeken in het onderzoek naar en de zorg voor 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>Onderzoek in samenwerking tentoongesteld!  <\/b>Van links naar rechts: Diane Schriner (ECDGA), Elise Fitzerald (UAB Medical Student &amp; ECDGA Volunteer), Jerome Henson (ECDGA) bespreken de poster, &#8220;Filling an Unmet Need: Een overzicht van het ECDGA-register&#8221;. De ECDGA-registratie van contactpersonen helpt om op basis van gegevens vooruitgang te boeken in het onderzoek naar en de zorg voor ECD.<\/p><\/div>\n<p>Deze week vertegenwoordigen ECDGA-president Diane Schriner, bestuurslid Paul Hendrie, MD, en teamlid Jerome Henson met trots de <b>Erdheim-Chester Disease Global Alliance<\/b> op de <b>41e jaarlijkse bijeenkomst van de Histiocyte Society<\/b>!<\/p>\n<p>Deze internationale bijeenkomst brengt artsen en wetenschappers samen die zich inzetten voor een beter begrip en een betere behandeling van histiocytaire aandoeningen, waaronder <b>Erdheim-Chester Disease (ECD)<\/b>, <b>Langerhans Cell Histiocytosis (LCH)<\/b>, <b>Rosai-Dorfman-Destombes Disease (RDD)<\/b> en <b>Haemophagocytic Lymphohistiocytosis (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">Het ECDGA-team richt zich op:<\/p>\n<ul>\n<li>Onderzoeksinteresse in ECD bevorderen<\/li>\n<li>De wereldwijde samenwerking met andere belangengroepen versterken<\/li>\n<li>Pleiten voor de ontwikkeling van nieuwe ECD zorgcentra over de hele wereld<\/li>\n<\/ul>\n<p>Het is inspirerend om te zien dat het momentum rond ECD groeit dankzij al het werk en de steun van de ECD-gemeenschap.<\/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>Samenwerkingsgesprekken in actie!  <\/b>Van links naar rechts: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA &#8211; Canada), bespreking van de poster, &#8220;Global Histio: The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis&#8221;. Dit project benadrukt de kracht van internationale samenwerking op het gebied van belangenbehartiging &#8211; waar ECDGA een trotse deelnemer aan is.<\/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 onderzoek wordt gedeeld!<\/b>  Van links naar rechts: Jerome Henson (ECDGA), Laura Eurelings, MD (Erasmus MC Universitair Medisch Centrum), Diane Schriner (ECDGA), bespreking van de poster, &#8220;Anti-IL-6 Therapy in Erdheim-Chester Disease.&#8221; Gesprekken zoals deze dragen bij aan een beter wetenschappelijk begrip van 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>ECDGA-programma&#8217;s onder de aandacht brengen!  <\/b>Diane Schriner bij de informatietafel van ECDGA, waar ze details deelt over de ondersteuningsprogramma&#8217;s van ECDGA, waaronder ons groeiende netwerk van ECD Referral Care Centers over de hele wereld.<\/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>Internationale samenwerking in actie!  <\/b>Van links naar acht: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children&#8217;s University Hospital, Itali\u00eb). Grensoverschrijdende partnerschappen zijn essentieel voor een beter begrip van de ziekte van 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>Inzicht van de medische adviesraad van ECDGA!  <\/b>Van links naar rechts: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester), en Jerome Henson (ECDGA) bespreken zorgstrategie\u00ebn en onderzoeksprioriteiten. Dr. Go is een gewaardeerd lid van de medische adviesraad van ECDGA.<\/p><\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Deze week vertegenwoordigen ECDGA-president Diane Schriner, bestuurslid Paul Hendrie, MD, en teamlid Jerome Henson met trots de Erdheim-Chester Disease Global Alliance op de 41e jaarlijkse bijeenkomst van de Histiocyte Society! [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":103272,"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":[420],"tags":[475,500,473,4880,3304,3825,2631],"class_list":["post-103243","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-nieuws","tag-ecd-bewustzijn","tag-ecdga-nl","tag-erdheimchesterdisease-nl","tag-globalhistiocytosis-nl","tag-patientadvocacy-nl","tag-zeldzaammaarkrachtig","tag-zeldzameziekteadvocatie"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/103243","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=103243"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/103243\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media\/103272"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=103243"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/categories?post=103243"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/tags?post=103243"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}