{"id":48311,"date":"2025-04-29T05:30:52","date_gmt":"2025-04-29T09:30:52","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=48311"},"modified":"2025-08-23T17:13:07","modified_gmt":"2025-08-23T21:13:07","slug":"%ce%bf-%cf%80%ce%b1%ce%bb%ce%bc%cf%8c%cf%82-%cf%84%ce%b7%cf%82-%ce%ba%ce%bf%ce%b9%ce%bd%cf%8c%cf%84%ce%b7%cf%84%ce%ac%cf%82-%ce%bc%ce%b1%cf%82-%ce%bf%ce%b9-%ce%b5%ce%b8%ce%b5%ce%bb%ce%bf%ce%bd%cf%84","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/el\/the-heartbeat-of-our-community-volunteer-chat-moderators\/","title":{"rendered":"\u039f \u03c0\u03b1\u03bb\u03bc\u03cc\u03c2 \u03c4\u03b7\u03c2 \u03ba\u03bf\u03b9\u03bd\u03cc\u03c4\u03b7\u03c4\u03ac\u03c2 \u03bc\u03b1\u03c2: \u0395\u03b8\u03b5\u03bb\u03bf\u03bd\u03c4\u03ad\u03c2 \u03c3\u03c5\u03bd\u03c4\u03bf\u03bd\u03b9\u03c3\u03c4\u03ad\u03c2 \u03c3\u03c5\u03b6\u03b7\u03c4\u03ae\u03c3\u03b5\u03c9\u03bd"},"content":{"rendered":"<p>\u038c\u03c4\u03b1\u03bd 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\u03b1\u03bd\u03b8\u03b5\u03ba\u03c4\u03b9\u03ba\u03cc\u03c4\u03b7\u03c4\u03b1 \u03bc\u03b9\u03b1\u03c2 \u03ba\u03bf\u03b9\u03bd\u03cc\u03c4\u03b7\u03c4\u03b1\u03c2 \u03c0\u03bf\u03c5 \u03b4\u03b9\u03b1\u03bc\u03bf\u03c1\u03c6\u03ce\u03b8\u03b7\u03ba\u03b5 \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd \u03ba\u03b1\u03bb\u03bf\u03c3\u03cd\u03bd\u03b7 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03bd \u03c0\u03c1\u03bf\u03c3\u03c6\u03bf\u03c1\u03ac.<\/p>\n<h3>\u0395\u03bb\u03ac\u03c4\u03b5 \u03bc\u03b1\u03b6\u03af \u03bc\u03b1\u03c2 \u03bd\u03b1 \u03c0\u03bf\u03cd\u03bc\u03b5 \u00ab\u03b5\u03c5\u03c7\u03b1\u03c1\u03b9\u03c3\u03c4\u03ce\u00bb<\/h3>\n<p>\u039c\u03b5 \u03b1\u03c6\u03bf\u03c1\u03bc\u03ae \u03c4\u03bf\u03bd \u039c\u03ae\u03bd\u03b1 \u0395\u03b8\u03b5\u03bb\u03bf\u03bd\u03c4\u03b9\u03c3\u03bc\u03bf\u03cd, \u03c3\u03b1\u03c2 \u03c0\u03c1\u03bf\u03c3\u03ba\u03b1\u03bb\u03bf\u03cd\u03bc\u03b5 \u03bd\u03b1 \u03b3\u03b9\u03bf\u03c1\u03c4\u03ac\u03c3\u03bf\u03c5\u03bc\u03b5 \u03bc\u03b1\u03b6\u03af \u03b1\u03c5\u03c4\u03bf\u03cd\u03c2 \u03c4\u03bf\u03c5\u03c2 \u03ba\u03b1\u03c4\u03b1\u03c0\u03bb\u03b7\u03ba\u03c4\u03b9\u03ba\u03bf\u03cd\u03c2 \u03b1\u03bd\u03b8\u03c1\u03ce\u03c0\u03bf\u03c5\u03c2. \u03a0\u03c1\u03bf\u03c3\u03b5\u03b3\u03b3\u03af\u03c3\u03c4\u03b5 \u03c4\u03bf\u03c5\u03c2 \u03c3\u03c4\u03b7\u03bd \u03b5\u03c0\u03cc\u03bc\u03b5\u03bd\u03b7 \u03c3\u03c5\u03b6\u03ae\u03c4\u03b7\u03c3\u03ae \u03c3\u03b1\u03c2, \u03c3\u03c4\u03b5\u03af\u03bb\u03c4\u03b5 \u03c4\u03bf\u03c5\u03c2 \u03ad\u03bd\u03b1 \u03bc\u03ae\u03bd\u03c5\u03bc\u03b1 \u03b5\u03ba\u03c4\u03af\u03bc\u03b7\u03c3\u03b7\u03c2 \u03ae \u03b1\u03c0\u03bb\u03ce\u03c2 \u03b5\u03bc\u03c6\u03b1\u03bd\u03b9\u03c3\u03c4\u03b5\u03af\u03c4\u03b5 \u03c3\u03b5 \u03bc\u03b9\u03b1 \u03c3\u03c5\u03bd\u03b5\u03b4\u03c1\u03af\u03b1 \u03bc\u03b5 \u03c4\u03b7\u03bd \u03ba\u03ac\u03bc\u03b5\u03c1\u03ac \u03c3\u03b1\u03c2 \u03b5\u03bd\u03b5\u03c1\u03b3\u03bf\u03c0\u03bf\u03b9\u03b7\u03bc\u03ad\u03bd\u03b7 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03bd \u03ba\u03b1\u03c1\u03b4\u03b9\u03ac \u03c3\u03b1\u03c2 \u03b1\u03bd\u03bf\u03b9\u03c7\u03c4\u03ae. \u039f\u03b9 \u03c3\u03c5\u03bd\u03c4\u03bf\u03bd\u03b9\u03c3\u03c4\u03ad\u03c2 \u03bc\u03b1\u03c2 \u03c0\u03c1\u03bf\u03c3\u03c6\u03ad\u03c1\u03bf\u03c5\u03bd \u03c4\u03cc\u03c3\u03b1 \u03c0\u03bf\u03bb\u03bb\u03ac \u03b1\u03c0\u03cc \u03c4\u03bf\u03bd \u03b5\u03b1\u03c5\u03c4\u03cc \u03c4\u03bf\u03c5\u03c2 \u2014 \u03b1\u03c2 \u03c4\u03bf\u03c5\u03c2 \u03b1\u03bd\u03c4\u03b1\u03c0\u03bf\u03b4\u03ce\u03c3\u03bf\u03c5\u03bc\u03b5 \u03c4\u03b7 \u03c7\u03ac\u03c1\u03b7 \u03b1\u03bd\u03b1\u03b3\u03bd\u03c9\u03c1\u03af\u03b6\u03bf\u03bd\u03c4\u03b1\u03c2 \u03c4\u03b7 \u03c3\u03c5\u03bc\u03b2\u03bf\u03bb\u03ae \u03c4\u03bf\u03c5\u03c2.<\/p>\n<p>\u0393\u03b9\u03b1\u03c4\u03af \u03cc\u03c4\u03b1\u03bd \u03be\u03b5\u03b4\u03b9\u03c0\u03bb\u03ce\u03bd\u03b5\u03b9\u03c2 \u03c4\u03b1 \u03b4\u03b9\u03ac\u03c6\u03bf\u03c1\u03b1 \u03b5\u03c0\u03af\u03c0\u03b5\u03b4\u03b1 \u03c4\u03b7\u03c2 \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1\u03c2, \u03c4\u03b7\u03c2 \u03c5\u03c0\u03b5\u03c1\u03ac\u03c3\u03c0\u03b9\u03c3\u03b7\u03c2 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03c2 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7\u03c2, \u03c4\u03bf \u03c0\u03c1\u03b1\u03b3\u03bc\u03b1\u03c4\u03b9\u03ba\u03cc \u03b8\u03b5\u03bc\u03ad\u03bb\u03b9\u03bf \u03c4\u03bf\u03c5 \u03ad\u03c1\u03b3\u03bf\u03c5 \u03bc\u03b1\u03c2 \u03b5\u03af\u03bd\u03b1\u03b9 \u03c0\u03ac\u03bd\u03c4\u03b1 \u03bf\u03b9 \u03ac\u03bd\u03b8\u03c1\u03c9\u03c0\u03bf\u03b9 \u03c0\u03bf\u03c5 \u03b2\u03c1\u03af\u03c3\u03ba\u03bf\u03bd\u03c4\u03b1\u03b9 \u03c0\u03af\u03c3\u03c9 \u03b1\u03c0\u03cc \u03b1\u03c5\u03c4\u03cc.<\/p>\n<p>\u039a\u03b1\u03b9 \u03c3\u03c4\u03b7\u03bd ECDGA, \u03b1\u03c5\u03c4\u03ac \u03c4\u03b1 \u03b8\u03b5\u03bc\u03ad\u03bb\u03b9\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b3\u03b5\u03c1\u03ac, \u03b5\u03c0\u03b5\u03b9\u03b4\u03ae \u03ad\u03c7\u03bf\u03c5\u03bd \u03c7\u03c4\u03b9\u03c3\u03c4\u03b5\u03af \u03b1\u03c0\u03cc \u03b5\u03b8\u03b5\u03bb\u03bf\u03bd\u03c4\u03ad\u03c2.<\/p>\n<hr \/>\n<p><em>\u0397 \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) \u03b4\u03b5\u03bd \u03c0\u03b1\u03c1\u03ad\u03c7\u03b5\u03b9 \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03ad\u03c2 \u03c3\u03c5\u03bc\u03b2\u03bf\u03c5\u03bb\u03ad\u03c2, \u03b4\u03b9\u03b1\u03b3\u03bd\u03ce\u03c3\u03b5\u03b9\u03c2 \u03ae \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b5\u03c2. \u038c\u03bb\u03bf \u03c4\u03bf \u03c0\u03b5\u03c1\u03b9\u03b5\u03c7\u03cc\u03bc\u03b5\u03bd\u03bf \u03c0\u03b1\u03c1\u03ad\u03c7\u03b5\u03c4\u03b1\u03b9 \u03b1\u03c0\u03bf\u03ba\u03bb\u03b5\u03b9\u03c3\u03c4\u03b9\u03ba\u03ac \u03b3\u03b9\u03b1 \u03b5\u03bd\u03b7\u03bc\u03b5\u03c1\u03c9\u03c4\u03b9\u03ba\u03bf\u03cd\u03c2 \u03c3\u03ba\u03bf\u03c0\u03bf\u03cd\u03c2. \u0393\u03b9\u03b1 \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03ac \u03b6\u03b7\u03c4\u03ae\u03bc\u03b1\u03c4\u03b1, \u03c0\u03b1\u03c1\u03b1\u03ba\u03b1\u03bb\u03bf\u03cd\u03bc\u03b5 \u03bd\u03b1 \u03c3\u03c5\u03bc\u03b2\u03bf\u03c5\u03bb\u03b5\u03c5\u03c4\u03b5\u03af\u03c4\u03b5 \u03ad\u03bd\u03b1\u03bd \u03b5\u03c0\u03b1\u03b3\u03b3\u03b5\u03bb\u03bc\u03b1\u03c4\u03af\u03b1 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2.<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>When someone first hears the words\u00a0Erdheim-Chester Disease\u00a0(ECD), it can feel like stepping into unfamiliar territory\u2014an ultra-rare diagnosis that most have never encountered. But from the very beginning, one thing the [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":53245,"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":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[375,378,387,380,383,374,384,386,388,379,376,385,381,377,382],"class_list":["post-48311","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ecdawareness","tag-ecdcommunity","tag-ecdga","tag-ecdsupport","tag-ecdvolunteer","tag-erdheimchesterdisease","tag-hopeforecd","tag-makerarevisible","tag-powerofvolunteers","tag-rarebutstrong","tag-raredisease","tag-supportraredisease","tag-tealandnavy","tag-volunteerforecd","tag-zebraribbon"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/48311","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=48311"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/48311\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/53245"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=48311"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=48311"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=48311"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}