{"id":109872,"date":"2025-12-09T21:25:06","date_gmt":"2025-12-10T03:25:06","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=109872"},"modified":"2025-12-29T10:09:43","modified_gmt":"2025-12-29T16:09:43","slug":"a-equipe-de-lideranca-da-ecdga-promove-a-conscientizacao-sobre-a-ecd-na-conferencia-da-ash-em-orlando-florida","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/pt\/ecdga-leadership-shares-ecd-awareness-at-ash-conference-in-orlando-fl\/","title":{"rendered":"Lideran\u00e7a da ECDGA promove a conscientiza\u00e7\u00e3o sobre a ECD na Confer\u00eancia da ASH em Orlando, Fl\u00f3rida"},"content":{"rendered":"<p>Neste fim de semana, representantes da Alian\u00e7a Global para a Doen\u00e7a de Erdheim-Chester (ECDGA) participaram da Confer\u00eancia Anual da Sociedade Americana de Hematologia (ASH) em Orlando, Fl\u00f3rida \u2014 um dos principais encontros mundiais para profissionais da \u00e1rea de hematologia e pesquisadores de doen\u00e7as raras.<\/p>\n<p>A presidente do Conselho da ECDGA, Diane Schriner, e o membro da equipe Jerome Henson se reuniram com importantes especialistas m\u00e9dicos profundamente envolvidos no avan\u00e7o do tratamento da doen\u00e7a de Erdheim-Chester, incluindo:<\/p>\n<ul>\n<li>Ronald Go, m\u00e9dico, membro do Conselho da ECDGA<\/li>\n<li>Dr. Gaurav Goyal, membro do Conselho Consultivo M\u00e9dico da ECDGA e anfitri\u00e3o do Encontro de Pacientes e Familiares e do Simp\u00f3sio M\u00e9dico de 2026 em Birmingham, Alabama<\/li>\n<li>Oshrat Hershkovitz-Rokah, PhD, membro do Conselho Consultivo M\u00e9dico da ECDGA<\/li>\n<\/ul>\n<p>Ao longo da confer\u00eancia, a equipe interagiu com profissionais da \u00e1rea cl\u00ednica, pesquisadores e parceiros do setor para aumentar a conscientiza\u00e7\u00e3o sobre a ECD, discutir os desafios atuais no diagn\u00f3stico e no tratamento e destacar a necessidade cont\u00ednua de ampliar a pesquisa e a expertise cl\u00ednica.<\/p>\n<p>\u201cA ASH oferece uma plataforma inestim\u00e1vel para a educa\u00e7\u00e3o e a colabora\u00e7\u00e3o\u201d, afirmou Schriner. \u201cCada contato que estabelecemos ajuda a garantir que mais m\u00e9dicos reconhe\u00e7am a ECD e que mais pacientes recebam o atendimento oportuno e preciso que merecem.\u201d<\/p>\n<p>A ECDGA continua comprometida em fortalecer as parcerias dentro da comunidade m\u00e9dica, apoiar pesquisas inovadoras e empoderar as pessoas e fam\u00edlias afetadas pela doen\u00e7a de Erdheim-Chester.<\/p>\n<p>Gostar\u00edamos de expressar nossa gratid\u00e3o a todos que ajudaram a colocar a conscientiza\u00e7\u00e3o sobre a ECD em destaque na ASH 2025.<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>This weekend, ECDGA Board President Diane Schriner and staff member Jerome Henson had the privilege of meeting with esteemed medical leaders at the American Society of Hematology (ASH) Conference in Orlando, FL.<\/p>\n<p>They connected with:<br \/>\n\u2022\tRonald Go, MD, ECDGA Board Member<\/p>\n<p>\u2022\tGaurav Goyal, MD, ECDGA Medical Advisory Board Member and host of the 2026 Patient &amp; Family Gathering and Medical Symposium in Birmingham, Alabama<\/p>\n<p>\u2022\tOshrat Hershkovitz-Rokah, PhD, member of the ECDGA Medical Advisory Board<\/p>\n<p>Together, they helped raise critical awareness of Erdheim-Chester Disease (ECD) among hematologists and medical professionals from around the world.<\/p>\n<p>Every conversation, every connection, and every shared resource brings us one step closer to improved recognition, diagnosis, and care for those living with ECD.<\/p>\n<p>Thank you to everyone helping amplify the voice of the ECD community! \ud83d\udc9b<\/p>","protected":false},"author":14,"featured_media":109873,"comment_status":"closed","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":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[5488,3190,387,2252,376],"class_list":["post-109872","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ash2025","tag-ecd","tag-ecdga","tag-erdheimchester","tag-raredisease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/109872","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/comments?post=109872"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/109872\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media\/109873"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media?parent=109872"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/categories?post=109872"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/tags?post=109872"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}