{"id":20356,"date":"2022-10-20T11:01:51","date_gmt":"2022-10-20T16:01:51","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=20356"},"modified":"2025-08-23T18:10:05","modified_gmt":"2025-08-23T22:10:05","slug":"%ce%bd%ce%ad%ce%b1-%ce%bc%ce%b5%ce%bb%ce%ad%cf%84%ce%b7-%ce%b1%ce%bd%ce%b1%ce%bb%cf%8d%ce%b5%ce%b9-%cf%84%ce%b9%cf%82-%cf%80%cf%81%ce%bf%ce%ba%ce%bb%ce%ae%cf%83%ce%b5%ce%b9%cf%82-%cf%80%ce%bf%cf%85","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/el\/new-paper-details-challenges-of-caregiving-for-ecd-and-rare-disease-patients\/","title":{"rendered":"\u039d\u03ad\u03b1 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03b1\u03bd\u03b1\u03bb\u03cd\u03b5\u03b9 \u03c4\u03b9\u03c2 \u03c0\u03c1\u03bf\u03ba\u03bb\u03ae\u03c3\u03b5\u03b9\u03c2 \u03c4\u03b7\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 ECD \u03ba\u03b1\u03b9 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03b9\u03c2"},"content":{"rendered":"<p>\u039c\u03b9\u03b1 \u03bd\u03ad\u03b1 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03c0\u03bf\u03c5 \u03b4\u03b7\u03bc\u03bf\u03c3\u03b9\u03b5\u03cd\u03b8\u03b7\u03ba\u03b5 \u03c3\u03c4\u03bf <em>Lancet<\/em>\u00a0<em>eClinicalMedicine<\/em>, \u03c0\u03b5\u03c1\u03b9\u03b3\u03c1\u03ac\u03c6\u03b5\u03b9 \u03bb\u03b5\u03c0\u03c4\u03bf\u03bc\u03b5\u03c1\u03ce\u03c2 \u03c4\u03cc\u03c3\u03bf \u03c4\u03b1 \u03c3\u03b7\u03bc\u03b1\u03bd\u03c4\u03b9\u03ba\u03ac \u03bf\u03c6\u03ad\u03bb\u03b7 \u03cc\u03c3\u03bf \u03ba\u03b1\u03b9 \u03c4\u03b9\u03c2 \u03c0\u03c1\u03bf\u03ba\u03bb\u03ae\u03c3\u03b5\u03b9\u03c2 \u03c0\u03bf\u03c5 \u03c3\u03c5\u03bd\u03b5\u03c0\u03ac\u03b3\u03b5\u03c4\u03b1\u03b9 \u03b7 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03c3\u03c0\u03ac\u03bd\u03b9\u03bf\u03c5\u03c2 \u03ba\u03b1\u03c1\u03ba\u03af\u03bd\u03bf\u03c5\u03c2, \u03cc\u03c0\u03c9\u03c2 \u03b7 \u03bd\u03cc\u03c3\u03bf\u03c2 Erdheim-Chester (ECD).<\/p>\n<p>\u03a4\u03bf \u03ac\u03c1\u03b8\u03c1\u03bf \u03c3\u03c5\u03bd\u03c4\u03ac\u03c7\u03b8\u03b7\u03ba\u03b5 \u03c3\u03c4\u03bf \u03c0\u03bb\u03b1\u03af\u03c3\u03b9\u03bf \u03c3\u03c5\u03bd\u03b5\u03c1\u03b3\u03b1\u03c3\u03af\u03b1\u03c2 \u03bc\u03b5\u03c4\u03b1\u03be\u03cd \u03b9\u03b1\u03c4\u03c1\u03ce\u03bd \u03ba\u03b1\u03b9 \u03bf\u03c1\u03b3\u03b1\u03bd\u03b9\u03c3\u03bc\u03ce\u03bd \u03c5\u03b3\u03b5\u03af\u03b1\u03c2, \u03bc\u03b5\u03c4\u03b1\u03be\u03cd \u03c4\u03c9\u03bd \u03bf\u03c0\u03bf\u03af\u03c9\u03bd \u03ba\u03b1\u03b9 \u03b7 \u03a0\u03b1\u03b3\u03ba\u03cc\u03c3\u03bc\u03b9\u03b1 \u03a3\u03c5\u03bc\u03bc\u03b1\u03c7\u03af\u03b1 \u03b3\u03b9\u03b1 \u03c4\u03b7 \u039d\u03cc\u03c3\u03bf Erdheim-Chester (ECDGA), \u03b5\u03bd\u03ce \u03c3\u03c5\u03bd-\u03c3\u03c5\u03b3\u03b3\u03c1\u03b1\u03c6\u03b5\u03af\u03c2 \u03c4\u03bf\u03c5 \u03b5\u03af\u03bd\u03b1\u03b9 \u03bf \u0394\u03c1. Eli L. Diamond \u03ba\u03b1\u03b9 \u03b7 Hannah-Rose Mitchell, Ph.D., MPH, \u03c4\u03bf\u03c5 \u039a\u03ad\u03bd\u03c4\u03c1\u03bf\u03c5 \u039a\u03b1\u03c1\u03ba\u03af\u03bd\u03bf\u03c5 Memorial Sloan Kettering.<\/p>\n<p><em>\u03a0\u03c1\u03bf\u03ba\u03bb\u03ae\u03c3\u03b5\u03b9\u03c2 \u03ba\u03b1\u03b9 \u03b8\u03b5\u03c4\u03b9\u03ba\u03ad\u03c2 \u03b5\u03c0\u03b9\u03c0\u03c4\u03ce\u03c3\u03b5\u03b9\u03c2 \u03c4\u03b7\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03c3\u03c0\u03ac\u03bd\u03b9\u03bf\u03c5\u03c2 \u03ba\u03b1\u03c1\u03ba\u03af\u03bd\u03bf\u03c5\u03c2: \u039c\u03b9\u03b1 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03bc\u03b5\u03b9\u03ba\u03c4\u03ce\u03bd \u03bc\u03b5\u03b8\u03cc\u03b4\u03c9\u03bd \u03b3\u03b9\u03b1 \u03c4\u03bf\u03c5\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03bd\u03cc\u03c3\u03bf Erdheim-Chester \u03ba\u03b1\u03b9 \u03ac\u03bb\u03bb\u03b1 \u03b9\u03c3\u03c4\u03b9\u03bf\u03ba\u03c5\u03c4\u03c4\u03b1\u03c1\u03b9\u03ba\u03ac \u03bd\u03b5\u03bf\u03c0\u03bb\u03ac\u03c3\u03bc\u03b1\u03c4\u03b1,<\/em> \u03b4\u03b9\u03b5\u03be\u03ae\u03b3\u03b1\u03b3\u03b5 \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1 \u03bc\u03b5\u03c4\u03b1\u03be\u03cd \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 ECD \u03ba\u03b1\u03b9 \u03ac\u03bb\u03bb\u03b1 \u03b9\u03c3\u03c4\u03b9\u03bf\u03ba\u03c5\u03c4\u03c4\u03b1\u03c1\u03b9\u03ba\u03ac \u03bd\u03b5\u03bf\u03c0\u03bb\u03ac\u03c3\u03bc\u03b1\u03c4\u03b1 (HN).<\/p>\n<p>\u0397 \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1 \u03b5\u03c0\u03b9\u03ba\u03b5\u03bd\u03c4\u03c1\u03ce\u03b8\u03b7\u03ba\u03b5 \u03c3\u03b5 \u03b6\u03b7\u03c4\u03ae\u03bc\u03b1\u03c4\u03b1 \u03c0\u03bf\u03c5 \u03b1\u03c6\u03bf\u03c1\u03bf\u03cd\u03c3\u03b1\u03bd \u03c4\u03b9\u03c2 \u03c3\u03c5\u03bd\u03bf\u03bb\u03b9\u03ba\u03ad\u03c2 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\u03c0\u03b1\u03c1\u03ad\u03c7\u03bf\u03c5\u03bd.<\/p>\n<p>\u0395\u03af\u03bd\u03b1\u03b9 \u03b1\u03c0\u03cc \u03ba\u03b1\u03b9\u03c1\u03cc \u03b3\u03bd\u03c9\u03c3\u03c4\u03cc \u03cc\u03c4\u03b9 \u03bf\u03b9 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03c0\u03b9\u03bf \u03c3\u03c5\u03bd\u03b7\u03b8\u03b9\u03c3\u03bc\u03ad\u03bd\u03bf\u03c5\u03c2 \u03ba\u03b1\u03c1\u03ba\u03af\u03bd\u03bf\u03c5\u03c2 \u03ad\u03c7\u03bf\u03c5\u03bd \u03ba\u03b1\u03c4\u03b1\u03c6\u03ad\u03c1\u03b5\u03b9 \u03bd\u03b1 \u03b1\u03bd\u03c4\u03bb\u03ae\u03c3\u03bf\u03c5\u03bd \u03ad\u03bd\u03b1 \u03c3\u03b7\u03bc\u03b1\u03bd\u03c4\u03b9\u03ba\u03cc \u03b1\u03af\u03c3\u03b8\u03b7\u03bc\u03b1 \u03bd\u03bf\u03ae\u03bc\u03b1\u03c4\u03bf\u03c2 \u03b1\u03c0\u03cc \u03c4\u03b7 \u03b4\u03bf\u03c5\u03bb\u03b5\u03b9\u03ac \u03c4\u03bf\u03c5\u03c2, \u03b1\u03bb\u03bb\u03ac \u03b1\u03c5\u03c4\u03ae \u03b5\u03af\u03bd\u03b1\u03b9 \u03b7 \u03c0\u03c1\u03ce\u03c4\u03b7 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03c0\u03bf\u03c5 \u03b5\u03be\u03b5\u03c4\u03ac\u03b6\u03b5\u03b9 \u03c4\u03b7 \u201c\u03b4\u03b7\u03bc\u03b9\u03bf\u03c5\u03c1\u03b3\u03af\u03b1 \u03bd\u03bf\u03ae\u03bc\u03b1\u03c4\u03bf\u03c2\u201d \u03c3\u03b5 \u03c3\u03c7\u03ad\u03c3\u03b7 \u03bc\u03b5 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2, \u03cc\u03c0\u03c9\u03c2 \u03b7 ECD.<\/p>\n<p>\u0397 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03ba\u03b1\u03c4\u03ad\u03bb\u03b7\u03be\u03b5 \u03c3\u03c4\u03bf \u03c3\u03c5\u03bc\u03c0\u03ad\u03c1\u03b1\u03c3\u03bc\u03b1 \u03cc\u03c4\u03b9 \u03c4\u03bf 78% \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 ECD \u03ba\u03b1\u03b9 \u03ac\u03bb\u03bb\u03b5\u03c2 HN \u03b1\u03bd\u03ad\u03c6\u03b5\u03c1\u03b1\u03bd \u03bc\u03ad\u03c4\u03c1\u03b9\u03b5\u03c2 \u03ad\u03c9\u03c2 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\u03c3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03c4\u03b7 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03bd \u03b5\u03bc\u03c0\u03b5\u03b9\u03c1\u03af\u03b1 \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd, \u03bf\u03b9 \u03c3\u03c5\u03bd\u03b5\u03c1\u03b3\u03ac\u03c4\u03b5\u03c2 \u03bc\u03b1\u03c2 \u03c3\u03c4\u03bf American Cancer Institute \u03ba\u03b1\u03b9 \u03c3\u03c4\u03b7\u03bd Histiocytosis Association \u03b8\u03b1 \u03b4\u03b9\u03bf\u03c1\u03b3\u03b1\u03bd\u03ce\u03c3\u03bf\u03c5\u03bd \u03ad\u03bd\u03b1 \u03b4\u03b9\u03b1\u03b4\u03b9\u03ba\u03c4\u03c5\u03b1\u03ba\u03cc \u03c3\u03b5\u03bc\u03b9\u03bd\u03ac\u03c1\u03b9\u03bf \u03bc\u03b5 \u03c4\u03bf\u03bd \u0394\u03c1. Eli L. Diamond \u03c3\u03c4\u03b9\u03c2 29 \u039d\u03bf\u03b5\u03bc\u03b2\u03c1\u03af\u03bf\u03c5<sup>th<\/sup>. <a href=\"https:\/\/cbiit.webex.com\/mw3300\/mywebex\/default.do?nomenu=true&amp;siteurl=cbiit&amp;service=6&amp;rnd=0.6628917806352204&amp;main_url=https%3A%2F%2Fcbiit.webex.com%2Fec3300%2Feventcenter%2Fevent%2FeventAction.do%3FtheAction%3Ddetail%26%26%26EMK%3D4832534b0000000513431cf50b492087679d7994db1f8bb034e4d672687425b2e731a3863438230b%26siteurl%3Dcbiit%26confViewID%3D239789257123701538%26encryptTicket%3DSDJTSwAAAAWT7FHh1sOD_50z3yH3HcY2AQLzm1enCLGCV_WSXpQl4A2%26\">\u0397 \u03b5\u03b3\u03b3\u03c1\u03b1\u03c6\u03ae \u03b5\u03af\u03bd\u03b1\u03b9 \u03b4\u03c9\u03c1\u03b5\u03ac\u03bd<\/a> \u03b3\u03b9\u03b1 \u03c4\u03bf \u03ba\u03bf\u03b9\u03bd\u03cc \u03c3\u03c4\u03bf \u03bf\u03c0\u03bf\u03af\u03bf \u03b1\u03c0\u03b5\u03c5\u03b8\u03cd\u03bd\u03b5\u03c4\u03b1\u03b9 \u2014 \u03b5\u03c1\u03b5\u03c5\u03bd\u03b7\u03c4\u03ad\u03c2, \u03b1\u03ba\u03c4\u03b9\u03b2\u03b9\u03c3\u03c4\u03ad\u03c2, \u03c5\u03c0\u03b5\u03cd\u03b8\u03c5\u03bd\u03bf\u03c5\u03c2 \u03c7\u03ac\u03c1\u03b1\u03be\u03b7\u03c2 \u03c0\u03bf\u03bb\u03b9\u03c4\u03b9\u03ba\u03ae\u03c2 \u03ba\u03b1\u03b9 \u03b5\u03c0\u03b1\u03b3\u03b3\u03b5\u03bb\u03bc\u03b1\u03c4\u03af\u03b5\u03c2 \u03c4\u03bf\u03c5 \u03c4\u03bf\u03bc\u03ad\u03b1 \u03c4\u03b7\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2 \u2014 \u03c0\u03bf\u03c5 \u03b5\u03c0\u03b9\u03b8\u03c5\u03bc\u03bf\u03cd\u03bd \u03bd\u03b1 \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03ac\u03c3\u03c7\u03bf\u03c5\u03bd \u03bc\u03b1\u03b6\u03af \u03bc\u03b1\u03c2!<\/p>\n<p><a href=\"https:\/\/www.thelancet.com\/journals\/eclinm\/article\/PIIS2589-5370(22)00400-X\/fulltext\" target=\"_blank\" rel=\"noopener\">\u0394\u03b9\u03b1\u03b2\u03ac\u03c3\u03c4\u03b5 \u03c4\u03bf \u03ac\u03c1\u03b8\u03c1\u03bf \u03b5\u03b4\u03ce.<\/a><\/p>\n<p>\u0393\u03b9\u03b1 \u03c0\u03b5\u03c1\u03b9\u03c3\u03c3\u03cc\u03c4\u03b5\u03c1\u03b5\u03c2 \u03c0\u03bb\u03b7\u03c1\u03bf\u03c6\u03bf\u03c1\u03af\u03b5\u03c2 \u03c3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03c4\u03bf \u03c0\u03c1\u03cc\u03b3\u03c1\u03b1\u03bc\u03bc\u03b1 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03c4\u03b7\u03c2 ECDGA, \u03b5\u03c0\u03b9\u03c3\u03ba\u03b5\u03c6\u03b8\u03b5\u03af\u03c4\u03b5: <a href=\"https:\/\/www.erdheim-chester.org\/el\/caregiver-carer\/\">https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD). The paper was created [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":45942,"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":[55,101,83,54,53,80,133,56,82,52,73],"class_list":["post-20356","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","category-news","category-research-awareness","tag-advocacy","tag-awareness","tag-blood-cancer","tag-blood-disorder","tag-cancer","tag-caregiver","tag-disease-education","tag-erdheim-chester","tag-rare-cancer","tag-rare-disease","tag-studies"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/20356","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/users\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=20356"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/20356\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/45942"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=20356"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=20356"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=20356"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}