{"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":"los-responsables-de-la-ecdga-difunden-informacion-sobre-el-desarrollo-de-la-primera-infancia-en-la-conferencia-de-la-ash-celebrada-en-orlando-florida","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/ecdga-leadership-shares-ecd-awareness-at-ash-conference-in-orlando-fl\/","title":{"rendered":"Los responsables de la ECDGA difunden informaci\u00f3n sobre el ECD en la conferencia de la ASH celebrada en Orlando (Florida)"},"content":{"rendered":"<p>Este fin de semana, representantes de la Alianza Global contra la Enfermedad de Erdheim-Chester (ECDGA) participaron en la Conferencia Anual de la Sociedad Americana de Hematolog\u00eda (ASH) celebrada en Orlando, Florida, uno de los principales encuentros mundiales para profesionales de la hematolog\u00eda e investigadores de enfermedades raras.<\/p>\n<p>La presidenta de la Junta Directiva de la ECDGA, Diane Schriner, y Jerome Henson, miembro del personal, se reunieron con destacados expertos m\u00e9dicos que participan activamente en el avance de la atenci\u00f3n sanitaria de la enfermedad de Erdheim-Chester, entre los que se encuentran:<\/p>\n<ul>\n<li>Ronald Go, doctor en Medicina, miembro de la Junta Directiva de la ECDGA<\/li>\n<li>Gaurav Goyal, MD, ECDGA Medical Advisory Board Member and host of the 2026 Patient &amp; Family Gathering and Medical Symposium in Birmingham, Alabama<\/li>\n<li>Oshrat Hershkovitz-Rokah, PhD, member of the ECDGA Medical Advisory Board<\/li>\n<\/ul>\n<p>Throughout the conference, the team engaged with clinicians, researchers, and industry partners to elevate awareness of ECD, discuss current challenges in diagnosis and treatment, and highlight the ongoing need for expanded research and clinical expertise.<\/p>\n<p>\u201cLa ASH ofrece una plataforma inestimable para la formaci\u00f3n y la colaboraci\u00f3n\u201d, afirm\u00f3 Schriner. \u201cCada contacto que establecemos contribuye a que m\u00e1s m\u00e9dicos reconozcan la ECD y a que m\u00e1s pacientes reciban la atenci\u00f3n oportuna y adecuada que se merecen\u201d.\u201d<\/p>\n<p>La ECDGA mantiene su compromiso de reforzar las colaboraciones dentro de la comunidad m\u00e9dica, apoyar la investigaci\u00f3n innovadora y empoderar a las personas y familias afectadas por la enfermedad de Erdheim-Chester.<\/p>\n<p>Queremos expresar nuestro agradecimiento a todas las personas que han contribuido a poner de relieve la concienciaci\u00f3n sobre la ECD en el congreso de la 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\/es\/wp-json\/wp\/v2\/posts\/109872","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=109872"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/109872\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/109873"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=109872"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=109872"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=109872"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}