{"id":103238,"date":"2025-09-30T09:13:07","date_gmt":"2025-09-30T14:13:07","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/unindo-se-para-a-pesquisa-de-doencas-raras-ecdga-na-41a-reuniao-anual-da-sociedade-de-histiocitos\/"},"modified":"2025-12-02T12:15:41","modified_gmt":"2025-12-02T18:15:41","slug":"unindo-se-para-a-pesquisa-de-doencas-raras-ecdga-na-41a-reuniao-anual-da-sociedade-de-histiocitos","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/pt-br\/unindo-se-para-a-pesquisa-de-doencas-raras-ecdga-na-41a-reuniao-anual-da-sociedade-de-histiocitos\/","title":{"rendered":"Unindo-se para a pesquisa de doen\u00e7as raras: ECDGA na 41\u00aa Reuni\u00e3o Anual da Sociedade de Histi\u00f3citos"},"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=\"Pesquisa colaborativa em exibi\u00e7\u00e3o! Da esquerda para a direita: Diane Schriner (ECDGA), Elise Fitzerald (estudante de medicina da UAB e volunt\u00e1ria do ECDGA), Jerome Henson (ECDGA) discutindo o p\u00f4ster \"Preenchendo uma necessidade n\u00e3o atendida: Uma an\u00e1lise do registro do ECDGA\". O registro de contatos do ECDGA ajuda a impulsionar o progresso com base em dados na pesquisa e no tratamento do 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>Pesquisa colaborativa em exibi\u00e7\u00e3o!  <\/b>Da esquerda para a direita: Diane Schriner (ECDGA), Elise Fitzerald (estudante de medicina da UAB e volunt\u00e1ria do ECDGA), Jerome Henson (ECDGA) discutindo o p\u00f4ster &#8220;Preenchendo uma necessidade n\u00e3o atendida: Uma an\u00e1lise do registro do ECDGA&#8221;. O registro de contatos do ECDGA ajuda a impulsionar o progresso com base em dados na pesquisa e no tratamento do ECD.<\/p><\/div>\n<p>Esta semana, a presidente do ECDGA, Diane Schriner, o membro do conselho, Paul Hendrie, MD, e o membro da equipe, Jerome Henson, est\u00e3o orgulhosamente representando a <b>Erdheim-Chester Disease Global Alliance<\/b> na <b>41\u00aa Reuni\u00e3o Anual da Histiocyte Society<\/b>!<\/p>\n<p>Esse encontro internacional re\u00fane m\u00e9dicos e cientistas dedicados ao avan\u00e7o da compreens\u00e3o e do tratamento de dist\u00farbios histioc\u00edticos, incluindo <b>a doen\u00e7a de Erdheim-Chester (ECD)<\/b>, <b>a histiocitose de c\u00e9lulas de Langerhans (LCH)<\/b>, <b>a doen\u00e7a de Rosai-Dorfman-Destombes (RDD)<\/b> e <b>a linfohistiocitose hemofagoc\u00edtica (HLH)<\/b>.<\/p>\n<p class=\"x_MsoNormal\">A equipe do ECDGA est\u00e1 focada em:<\/p>\n<ul>\n<li>Promover o interesse da pesquisa em DPI<\/li>\n<li>Fortalecimento da colabora\u00e7\u00e3o global com outros grupos de defesa<\/li>\n<li>Defender o desenvolvimento de novos centros de atendimento ao DPI em todo o mundo<\/li>\n<\/ul>\n<p>\u00c9 inspirador ver o impulso crescente em torno do ECD gra\u00e7as a todo o trabalho e apoio da comunidade 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>Conversas colaborativas em a\u00e7\u00e3o!  <\/b>Da esquerda para a direita: Jerome Henson (ECDGA), Fernando Gotz (Associa\u00e7\u00e3o OR), Diane Schriner (ECDGA), Claudio Di Girolama (HA &#8211; Canad\u00e1), discutindo o p\u00f4ster &#8220;Global Histio: The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis&#8221;. Esse projeto destaca o poder da colabora\u00e7\u00e3o internacional de defesa &#8211; da qual o ECDGA \u00e9 um orgulhoso participante.<\/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>Pesquisa de ECD sendo compartilhada!<\/b>  Da esquerda para a direita: Jerome Henson (ECDGA), Laura Eurelings, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), discutindo o p\u00f4ster, &#8220;Anti-IL-6 Therapy in Erdheim-Chester Disease&#8221;. Conversas como essas ajudam a impulsionar a compreens\u00e3o cient\u00edfica da DCE.<\/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>Aumentando a conscientiza\u00e7\u00e3o sobre os programas do ECDGA!  <\/b>Diane Schriner na mesa informativa do ECDGA, compartilhando detalhes sobre os programas de apoio do ECDGA &#8211; incluindo nossa crescente rede de Centros de Atendimento de Refer\u00eancia para ECD em todo o mundo.<\/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>Colabora\u00e7\u00e3o internacional em a\u00e7\u00e3o!  <\/b>Da esquerda para a direita: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children&#8217;s University Hospital, It\u00e1lia). As parcerias internacionais s\u00e3o essenciais para o avan\u00e7o da compreens\u00e3o da doen\u00e7a de 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>Voc\u00ea pode obter informa\u00e7\u00f5es do Conselho Consultivo M\u00e9dico do ECDGA!  <\/b>Da esquerda para a direita: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester) e Jerome Henson (ECDGA) discutem estrat\u00e9gias de atendimento e prioridades de pesquisa. O Dr. Go \u00e9 um membro valioso do Conselho Consultivo M\u00e9dico do ECDGA.<\/p><\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Esta semana, a presidente do ECDGA, Diane Schriner, o membro do conselho, Paul Hendrie, MD, e o membro da equipe, Jerome Henson, est\u00e3o orgulhosamente representando a Erdheim-Chester Disease Global Alliance [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":103280,"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":[417],"tags":[428,3316,427,440,4875,2641,3752],"class_list":["post-103238","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-noticias-pt-br","tag-conscientizacao-da-ecd","tag-defesa-do-paciente","tag-doenca-de-erdheimchester","tag-ecdga-pt-br","tag-globalhistiocitose","tag-rarediseaseadvocacy-defesa-de-doencas-raras","tag-raromaspoderoso"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts\/103238","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/comments?post=103238"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts\/103238\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/media\/103280"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/media?parent=103238"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/categories?post=103238"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/tags?post=103238"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}