{"id":9408,"date":"2020-03-31T15:22:44","date_gmt":"2020-03-31T15:22:44","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=9408"},"modified":"2025-08-23T17:13:41","modified_gmt":"2025-08-23T21:13:41","slug":"%d7%9e%d7%a1%d7%9e%d7%9a-%d7%94%d7%a7%d7%95%d7%a0%d7%a6%d7%a0%d7%96%d7%95%d7%a1-%d7%94%d7%99%d7%aa%d7%a8%d7%95%d7%a0%d7%95%d7%aa-%d7%9c%d7%9e%d7%98%d7%95%d7%a4%d7%9c%d7%99%d7%9d","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/consensus-document-patient-use-benefits\/","title":{"rendered":"\u05de\u05e1\u05de\u05da \u05d4\u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1: \u05d4\u05e9\u05d9\u05de\u05d5\u05e9 \u05d5\u05d4\u05d9\u05ea\u05e8\u05d5\u05e0\u05d5\u05ea \u05e2\u05d1\u05d5\u05e8 \u05d4\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd"},"content":{"rendered":"

\u05de\u05d4\u05d5 \u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1?<\/span><\/b> <\/span><\/p>\n

\u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1 \u05e8\u05e4\u05d5\u05d0\u05d9 \u05d4\u05d5\u05d0 \u05d3\u05d5\u05d7 \u05d1\u05e0\u05d5\u05e9\u05d0 \u05e1\u05e4\u05e6\u05d9\u05e4\u05d9, \u05db\u05d2\u05d5\u05df \u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8, \u05d4\u05de\u05d5\u05d2\u05e9 \u05e2\u05dc \u05d9\u05d3\u05d9 \u05e7\u05d1\u05d5\u05e6\u05ea \u05de\u05d5\u05de\u05d7\u05d9\u05dd \u05e8\u05e4\u05d5\u05d0\u05d9\u05d9\u05dd \u05d1\u05e2\u05dc\u05d9 \u05d9\u05d3\u05e2 \u05de\u05d9\u05d5\u05d7\u05d3 \u05d1\u05de\u05d7\u05dc\u05d4 \u05d6\u05d5. \u05e7\u05d1\u05d5\u05e6\u05ea \u05de\u05d5\u05de\u05d7\u05d9\u05dd \u05d6\u05d5 \u05de\u05e1\u05db\u05d9\u05de\u05d4 \u05e2\u05dc \u05d9\u05d3\u05e2 \u05d4\u05de\u05d1\u05d5\u05e1\u05e1 \u05e2\u05dc \u05e8\u05d0\u05d9\u05d5\u05ea \u05d5\u05e2\u05dc \u05d4\u05d9\u05d3\u05e2 \u05d4\u05e2\u05d3\u05db\u05e0\u05d9 \u05d1\u05d9\u05d5\u05ea\u05e8 (\u05d4\u05de\u05e6\u05d1 \u05d4\u05e0\u05d5\u05db\u05d7\u05d9 \u05e9\u05dc \u05d4\u05de\u05d3\u05e2). \u05de\u05d8\u05e8\u05ea\u05d5 \u05d4\u05e2\u05d9\u05e7\u05e8\u05d9\u05ea \u05d4\u05d9\u05d0 \u05dc\u05d9\u05d9\u05e2\u05e5 \u05dc\u05e8\u05d5\u05e4\u05d0\u05d9\u05dd \u05dc\u05d2\u05d1\u05d9 \u05d4\u05d3\u05e8\u05da \u05d4\u05d8\u05d5\u05d1\u05d4 \u05d1\u05d9\u05d5\u05ea\u05e8 \u05d5\u05d4\u05de\u05e7\u05d5\u05d1\u05dc\u05ea \u05dc\u05d0\u05d1\u05d7\u05df \u05d5\u05dc\u05d8\u05e4\u05dc \u05d1\u05de\u05d7\u05dc\u05d5\u05ea \u05de\u05e1\u05d5\u05d9\u05de\u05d5\u05ea, \u05d0\u05d5 \u05db\u05d9\u05e6\u05d3 \u05dc\u05d4\u05ea\u05de\u05d5\u05d3\u05d3 \u05e2\u05dd \u05ea\u05d7\u05d5\u05dd \u05e7\u05d1\u05dc\u05ea \u05d4\u05d7\u05dc\u05d8\u05d5\u05ea \u05de\u05e1\u05d5\u05d9\u05dd. \u05d1\u05d3\u05e8\u05da \u05db\u05dc\u05dc \u05de\u05d3\u05d5\u05d1\u05e8 \u05d1\u05d1\u05d9\u05d8\u05d5\u05d9 \u05e7\u05d4\u05d9\u05dc\u05ea\u05d9 \u05e9\u05dc \u05ea\u05d4\u05dc\u05d9\u05da \u05e7\u05d1\u05dc\u05ea \u05d4\u05d7\u05dc\u05d8\u05d5\u05ea \u05d5\u05e4\u05e8\u05e1\u05d5\u05dd \u05d4\u05de\u05d1\u05d5\u05e1\u05e1 \u05e2\u05dc \u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1.<\/span> <\/span><\/p>\n

\u05de\u05d3\u05d5\u05e2 \u05d7\u05e9\u05d5\u05d1\u05d4 \u05d4\u05e1\u05db\u05de\u05d4 \u05d1\u05ea\u05d7\u05d5\u05dd \u05d4\u05d1\u05e8\u05d9\u05d0\u05d5\u05ea, \u05d5\u05de\u05d4 \u05de\u05e9\u05de\u05e2\u05d5\u05ea\u05d4 \u05e2\u05d1\u05d5\u05e8 \u05d7\u05d5\u05dc\u05d9 \u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8?<\/span><\/b> <\/span><\/p>\n

Erdheim-Chester Disease (ECD) is so rare that diagnosis can take months or even years. Once a diagnosis has been made, the process of treatment begins, which can also be quite extensive process.<\/span> <\/span><\/p>\n

\u05d1\u05d6\u05db\u05d5\u05ea \u05d4\u05de\u05d0\u05de\u05e6\u05d9\u05dd \u05d4\u05de\u05e9\u05d5\u05ea\u05e4\u05d9\u05dd \u05e9\u05dc \u05d0\u05e0\u05e9\u05d9 \u05d4\u05de\u05e7\u05e6\u05d5\u05e2 \u05d4\u05e8\u05e4\u05d5\u05d0\u05d9\u05d9\u05dd \u05d4\u05de\u05d5\u05d1\u05d9\u05dc\u05d9\u05dd \u05d1\u05ea\u05d7\u05d5\u05dd \u05d4-ECD \u05de\u05e8\u05d7\u05d1\u05d9 \u05d4\u05e2\u05d5\u05dc\u05dd, \u05e0\u05db\u05ea\u05d1 \u05d3\u05d5\u05d7 \u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1 \u05d7\u05d3\u05e9 \u05d1\u05e0\u05d5\u05e9\u05d0 \u05d4-ECD, \u05d1\u05de\u05d8\u05e8\u05d4 \u05dc\u05d4\u05e7\u05dc \u05e2\u05dc \u05d7\u05dc\u05e7 \u05de\u05d4\u05e7\u05e9\u05d9\u05d9\u05dd \u05e9\u05e2\u05de\u05dd \u05de\u05ea\u05de\u05d5\u05d3\u05d3\u05d9\u05dd \u05d4\u05e8\u05d5\u05e4\u05d0\u05d9\u05dd \u05d4\u05de\u05d8\u05e4\u05dc\u05d9\u05dd.<\/span> <\/span><\/p>\n

\u05de\u05d4 \u05d4\u05de\u05e9\u05de\u05e2\u05d5\u05ea \u05e9\u05dc \u05d6\u05d4 \u05e2\u05d1\u05d5\u05e8 \u05d7\u05d5\u05dc\u05d9 ECD?<\/span><\/b> <\/span><\/p>\n

The goal of the consensus is to aid in improving diagnosis, treatment, and overall quality of life for Erdheim-Chester Disease patients by serving as guidelines for medical professionals treating patients.<\/span> <\/span><\/p>\n

\u05db\u05de\u05d8\u05d5\u05e4\u05dc \u05d0\u05d5 \u05db\u05d1\u05df \u05de\u05e9\u05e4\u05d7\u05d4, \u05ea\u05d5\u05db\u05dc\u05d5 \u05dc\u05e9\u05ea\u05e3 \u05d0\u05ea \u05d4\u05e7\u05d9\u05e9\u05d5\u05e8 \u05dc\u05de\u05e1\u05de\u05da \u05d4\u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1 \u05e2\u05dd \u05d4\u05e6\u05d5\u05d5\u05ea\u05d9\u05dd \u05d4\u05e8\u05e4\u05d5\u05d0\u05d9\u05d9\u05dd \u05d4\u05de\u05d8\u05e4\u05dc\u05d9\u05dd \u05d1\u05db\u05dd. \u05e9\u05ea\u05e4\u05d5 \u05d0\u05ea \u05de\u05d7\u05e9\u05d1\u05d5\u05ea\u05d9\u05db\u05dd \u05d5\u05d0\u05ea \u05db\u05dc \u05d4\u05e9\u05d0\u05dc\u05d5\u05ea \u05e9\u05d9\u05e9 \u05dc\u05db\u05dd \u05d1\u05e0\u05d5\u05d2\u05e2 \u05dc\u05d8\u05d9\u05e4\u05d5\u05dc \u05d4\u05e0\u05d5\u05db\u05d7\u05d9 \u05e9\u05dc\u05db\u05dd, \u05d5\u05db\u05d9\u05e6\u05d3 \u05d4\u05d5\u05d0 \u05ea\u05d5\u05d0\u05dd \u05d0\u05ea \u05de\u05e1\u05de\u05da \u05d4\u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1 \u05d4\u05d7\u05d3\u05e9.<\/span> <\/span><\/p>\n

\u05d0\u05ea \u05d4\u05e7\u05d5\u05d5\u05d9\u05dd \u05d4\u05de\u05e0\u05d7\u05d9\u05dd \u05d4\u05de\u05d5\u05e1\u05db\u05de\u05d9\u05dd \u05e9\u05e4\u05d5\u05e8\u05e1\u05de\u05d5 \u05dc\u05d0\u05d7\u05e8\u05d5\u05e0\u05d4 \u05e0\u05d9\u05ea\u05df \u05dc\u05de\u05e6\u05d5\u05d0 \u05db\u05d0\u05df.<\/a><\/strong><\/p>\n

\u05d0\u05dd \u05d9\u05e9 \u05dc\u05db\u05dd \u05e9\u05d0\u05dc\u05d5\u05ea \u05d0\u05d5 \u05d7\u05e9\u05e9\u05d5\u05ea \u05e0\u05d5\u05e1\u05e4\u05d9\u05dd \u05d1\u05e0\u05d5\u05d2\u05e2 \u05dc\u05de\u05e1\u05de\u05da \u05d4\u05e7\u05d5\u05e0\u05e6\u05e0\u05d6\u05d5\u05e1 \u05d4\u05e2\u05d3\u05db\u05e0\u05d9, \u05e4\u05e0\u05d5 \u05dc\u05e8\u05d5\u05e4\u05d0 \u05d1\u05de\u05e8\u05db\u05d6 \u05d4\u05d8\u05d9\u05e4\u05d5\u05dc \u05e9\u05dc ECD \u05d0\u05d5 \u05dc\u05e6\u05d5\u05d5\u05ea \u05d4-ECD Global Alliance.<\/span> \u05d0\u05e0\u05d5 \u05de\u05e7\u05d5\u05d5\u05d9\u05dd \u05e9\u05ea\u05e9\u05ea\u05e4\u05d5 \u05d0\u05ea \u05d4\u05de\u05d9\u05d3\u05e2 \u05d4\u05d6\u05d4 \u05e2\u05dd \u05d4\u05e6\u05d5\u05d5\u05ea \u05d4\u05e8\u05e4\u05d5\u05d0\u05d9 \u05e9\u05dc\u05db\u05dd.  <\/strong><\/span><\/p>\n

 <\/h3>\n

\u05dc\u05de\u05d9\u05d3\u05e2 \u05e0\u05d5\u05e1\u05e3, \u05e6\u05e4\u05d5 \u05d1\u05d4\u05e7\u05dc\u05d8\u05d5\u05ea \u05d4\u05e1\u05de\u05d9\u05e0\u05e8\u05d9\u05dd \u05d4\u05de\u05e7\u05d5\u05d5\u05e0\u05d9\u05dd \u05d4\u05d1\u05d0\u05d9\u05dd:<\/strong><\/h3>\n

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

What is a consensus?  A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of […]<\/p>\n","protected":false},"author":14,"featured_media":9361,"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":[67,51,70],"tags":[86,56,85,52],"class_list":["post-9408","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","category-news","category-research-awareness","tag-collaboration","tag-erdheim-chester","tag-medical-consensus","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/9408","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=9408"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/9408\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/9361"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=9408"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=9408"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=9408"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}