{"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":"ecdga-leadership-shares-ecd-awareness-at-ash-conference-in-orlando-fl","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/ecdga-leadership-shares-ecd-awareness-at-ash-conference-in-orlando-fl\/","title":{"rendered":"Les responsables de l'ECDGA sensibilisent au d\u00e9veloppement de la petite enfance lors de la conf\u00e9rence de l'ASH \u00e0 Orlando, en Floride"},"content":{"rendered":"<p>Ce week-end, des repr\u00e9sentants de l'Alliance mondiale contre la maladie d'Erdheim-Chester (ECDGA) ont particip\u00e9 au congr\u00e8s annuel de la Soci\u00e9t\u00e9 am\u00e9ricaine d'h\u00e9matologie (ASH) \u00e0 Orlando, en Floride \u2014 l'un des principaux rassemblements mondiaux destin\u00e9s aux professionnels de l'h\u00e9matologie et aux chercheurs sp\u00e9cialis\u00e9s dans les maladies rares.<\/p>\n<p>La pr\u00e9sidente du conseil d'administration de l'ECDGA, Diane Schriner, et J\u00e9r\u00f4me Henson, membre du personnel, ont rencontr\u00e9 des experts m\u00e9dicaux de premier plan fortement impliqu\u00e9s dans l'am\u00e9lioration de la prise en charge de la maladie d'Erdheim-Chester, notamment :<\/p>\n<ul>\n<li>Ronald Go, docteur en m\u00e9decine, membre du conseil d'administration de l'ECDGA<\/li>\n<li>Gaurav Goyal, docteur en m\u00e9decine, membre du comit\u00e9 consultatif m\u00e9dical de l'ECDGA et organisateur du Rassemblement des patients et de leurs familles et du Symposium m\u00e9dical de 2026 \u00e0 Birmingham, en Alabama<\/li>\n<li>Oshrat Hershkovitz-Rokah, docteur \u00e8s sciences, membre du comit\u00e9 consultatif m\u00e9dical de l'ECDGA<\/li>\n<\/ul>\n<p>Tout au long de la conf\u00e9rence, l'\u00e9quipe a \u00e9chang\u00e9 avec des cliniciens, des chercheurs et des partenaires du secteur priv\u00e9 afin de mieux faire conna\u00eetre l'ECD, de discuter des d\u00e9fis actuels en mati\u00e8re de diagnostic et de traitement, et de souligner la n\u00e9cessit\u00e9 permanente d'approfondir la recherche et de renforcer l'expertise clinique.<\/p>\n<p>\u201c L\u2019ASH offre une plateforme inestimable pour la formation et la collaboration \u201d, a d\u00e9clar\u00e9 M. Schriner. \u201c Chaque lien que nous tissons contribue \u00e0 faire en sorte que davantage de m\u00e9decins identifient l\u2019ECD et que davantage de patients b\u00e9n\u00e9ficient des soins rapides et adapt\u00e9s qu\u2019ils m\u00e9ritent. \u201d<\/p>\n<p>L'ECDGA reste d\u00e9termin\u00e9e \u00e0 renforcer ses partenariats au sein de la communaut\u00e9 m\u00e9dicale, \u00e0 soutenir la recherche innovante et \u00e0 apporter un soutien aux personnes et aux familles touch\u00e9es par la maladie d'Erdheim-Chester.<\/p>\n<p>Nous tenons \u00e0 remercier toutes les personnes qui ont contribu\u00e9 \u00e0 mettre en avant la question de l'ECD lors du congr\u00e8s de l'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\/fr\/wp-json\/wp\/v2\/posts\/109872","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=109872"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/109872\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/109873"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=109872"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=109872"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=109872"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}