{"id":19782,"date":"2021-09-27T13:14:10","date_gmt":"2021-09-27T18:14:10","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=19782"},"modified":"2025-08-23T17:14:17","modified_gmt":"2025-08-23T21:14:17","slug":"le-soutien-mondial-saccroit","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/global-support-rises\/","title":{"rendered":"Le soutien mondial s'accro\u00eet"},"content":{"rendered":"

\"\"<\/a>Une r\u00e9union virtuelle internationale consacr\u00e9e \u00e0 l'histiocytose s'est tenue en septembre dernier, \u00e0 l'occasion du Mois de la sensibilisation \u00e0 l'histiocytose 2021. Ce webinaire a \u00e9t\u00e9 organis\u00e9 et anim\u00e9 par l'Association espagnole d'OR ; le public \u00e9tait principalement compos\u00e9 de m\u00e9decins et d'un petit nombre de patients. <\/p>\n

One session during the conference included the ECD Global Alliance (ECDGA) and Histiocytosis Association (HA) on September 24, 2021. Dr. Gaurav Goyal, University of Alabama Birmingham, led the educational meeting by presenting the topic Impact in adult patients with LCH and Erdheim-Chester, ongoing treatments, and studies.  The talk included descriptions of the adult histiocytic disorders and common clinical features and treatments that have been found effective. Diagnostic tips were shared to help physicians confirm an accurate diagnosis of these similar diseases. <\/p>\n

Le La collaboration avec les associations de d\u00e9fense des personnes atteintes d'histiocytose \u00e0 travers le monde a apport\u00e9 de nombreux avantages.<\/strong> Cette initiative a notamment \u00e9t\u00e9 tr\u00e8s b\u00e9n\u00e9fique pour notre communaut\u00e9 hispanophone. Des m\u00e9decins d\u2019Argentine, d\u2019Espagne et d\u2019ailleurs ont pu recueillir des informations trouv\u00e9es et partag\u00e9es ici, aux \u00c9tats-Unis. Les participants ont beaucoup appr\u00e9ci\u00e9 cette occasion d\u2019apprendre et d\u2019offrir de meilleurs soins \u00e0 leurs patients. <\/p>\n

Les dirigeants de HA et de l'ECDGA ont pr\u00e9sent\u00e9 leur r\u00f4le dans l'accompagnement des patients atteints d'histiocytose et de la communaut\u00e9 m\u00e9dicale. Le Les r\u00e9seaux de m\u00e9decins sont \u00e9troitement li\u00e9s et ne cessent de s'\u00e9tendre<\/strong> au sein de ces organisations. Gr\u00e2ce aux actions de sensibilisation et de formation men\u00e9es par ces derni\u00e8res, des efforts sont d\u00e9ploy\u00e9s quotidiennement en faveur des soins aux hystiocytes.<\/p>\n

Le L'ECDGA apporte un soutien sp\u00e9cifique aux familles hispanophones gr\u00e2ce \u00e0 la mise en place de sessions de discussion trimestrielles.<\/strong>, offrant ainsi \u00e0 ces familles la possibilit\u00e9 de se retrouver virtuellement.\u00a0 Ce soutien \u00e9motionnel permet souvent aux patients et \u00e0 leurs proches de se sentir moins seuls, tout en les aidant \u00e0 mieux d\u00e9fendre leurs int\u00e9r\u00eats aupr\u00e8s de leurs \u00e9quipes soignantes. Des r\u00e9unions trimestrielles avec ces patients sont \u00e9galement organis\u00e9es en pr\u00e9sence d\u2019un m\u00e9decin hispanophone sp\u00e9cialis\u00e9 dans les maladies histiocytaires et leur prise en charge. Tous les patients et leurs proches sont les bienvenus pour participer \u00e0 ce chat !    <\/p>\n

Regardez l'enregistrement de ce webinaire sur YouTube.<\/a><\/p>\n

Consultez notre calendrier des sessions de chat.<\/a><\/p>\n

 <\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

An international histiocytosis virtual meeting was held this September during Histiocytosis Awareness Month of 2021. The webinar was organized and hosted by the OR Association of Spain, with the audience […]<\/p>\n","protected":false},"author":14,"featured_media":19783,"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":[51],"tags":[55,54,59,53,58,56,128,126,57,122,52,127],"class_list":["post-19782","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-espanol","tag-global-histio","tag-hairy-kidney","tag-histio","tag-rare-disease","tag-spanish"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/19782","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=19782"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/19782\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/19783"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=19782"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=19782"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=19782"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}