{"id":91947,"date":"2025-09-08T03:08:33","date_gmt":"2025-09-08T08:08:33","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=91947"},"modified":"2025-09-08T03:08:33","modified_gmt":"2025-09-08T08:08:33","slug":"theme-la-survie-dans-le-cadre-de-la-maladie-derdheim-chester-en-tenant-compte-du-point-de-vue-des-patients","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/topic-survivorship-in-erdheim-chester-disease-incorporating-the-patient-voice\/","title":{"rendered":"Th\u00e8me : La survie dans la maladie d'Erdheim-Chester : prendre en compte le point de vue des patients"},"content":{"rendered":"<p><strong>Date :<\/strong> 23 septembre 2025<br \/>\n<strong>Heure :<\/strong> 13 h 00 (heure du Centre)<\/p>\n<h3>Intervenant : Gaurav Goyal, docteur en m\u00e9decine.<br \/>\nUniversit\u00e9 de l'Alabama \u00e0 Birmingham<\/h3>\n<p>Le Dr Goyal est n\u00e9 et a grandi en Inde ; il a effectu\u00e9 son stage de sp\u00e9cialisation en h\u00e9matologie-oncologie \u00e0 la Mayo Clinic de Rochester, dans le Minnesota. Au cours de son passage \u00e0 la Mayo Clinic, il s'est sp\u00e9cialis\u00e9 dans les troubles histiocytaires, notamment la maladie d'Erdheim-Chester, l'histiocytose \u00e0 cellules de Langerhans et la maladie de Rosai-Dorfman. Il a men\u00e9 de nombreuses \u00e9tudes sur l\u2019histiocytose et a jou\u00e9 un r\u00f4le cl\u00e9 dans la cr\u00e9ation du premier groupe de travail multidisciplinaire sur l\u2019histiocytose, dont l\u2019objectif est d\u2019am\u00e9liorer la prise en charge des personnes atteintes de ces maladies rares.<\/p>\n<p>Le Dr Goyal a ensuite rejoint le service d'h\u00e9matologie-oncologie de l'Universit\u00e9 de l'Alabama \u00e0 Birmingham (UAB), o\u00f9 il a fond\u00e9 un centre de prise en charge de la maladie d'Erdheim-Chester. \u00c0 l'UAB, il a \u00e9galement lanc\u00e9 l'\u00e9tude \u00ab Histiocytic Disorder Survivor Study \u00bb en partenariat avec l'Erdheim-Chester Disease Global Alliance (ECDGA), contribuant ainsi \u00e0 faire progresser la recherche et le soutien aux patients atteints de troubles histiocytaires.<\/p>\n<p>&nbsp;<\/p>\n<h4><a href=\"https:\/\/us02web.zoom.us\/webinar\/register\/WN_bXelZbzKQrqT2_ermJIE0g\" target=\"_blank\" rel=\"noopener\">Inscrivez-vous ici<\/a><\/h4>","protected":false},"excerpt":{"rendered":"<p>Date: September 23, 2025 Time: 1:00 PM CT Speaker: Gaurav Goyal, M.D. University of Alabama at Birmingham Dr. Goyal was born and raised in India and completed his Hematology-Oncology Fellowship [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":91910,"comment_status":"open","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":[324],"tags":[],"class_list":["post-91947","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-webinars"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/91947","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=91947"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/91947\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/91910"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=91947"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=91947"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=91947"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}