{"id":19549,"date":"2021-02-17T17:02:46","date_gmt":"2021-02-17T17:02:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=19549"},"modified":"2026-08-19T07:08:41","modified_gmt":"2026-08-19T12:08:41","slug":"%ce%b7%ce%bc%ce%ad%cf%81%ce%b1-%cf%83%cf%80%ce%ac%ce%bd%ce%b9%cf%89%ce%bd-%cf%80%ce%b1%ce%b8%ce%ae%cf%83%ce%b5%cf%89%ce%bd-2021","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/el\/2021-rare-disease-day\/","title":{"rendered":"\u0397\u03bc\u03ad\u03c1\u03b1 \u03a3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03a0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd 2021"},"content":{"rendered":"<h1><strong>\u03a4\u0399 \u0395\u0399\u039d\u0391\u0399 \u0397 \u0397\u039c\u0395\u03a1\u0391 \u03a4\u03a9\u039d \u03a3\u03a0\u0391\u039d\u0399\u03a9\u039d \u039d\u039f\u03a3\u0397\u039c\u0391\u03a4\u03a9\u039d;<\/strong><\/h1>\n<p><em>28 \u03a6\u03b5\u03b2\u03c1\u03bf\u03c5\u03b1\u03c1\u03af\u03bf\u03c5 2021<\/em>, \u03b8\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b7 14\u03b7 \u0394\u03b9\u03b5\u03b8\u03bd\u03ae\u03c2 \u0397\u03bc\u03ad\u03c1\u03b1 \u03a3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03a0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd, \u03c4\u03b7\u03bd \u03bf\u03c0\u03bf\u03af\u03b1 \u03c3\u03c5\u03bd\u03c4\u03bf\u03bd\u03af\u03b6\u03b5\u03b9 \u03b7 EURORDIS. \u03a4\u03b7\u03bd \u03b7\u03bc\u03ad\u03c1\u03b1 \u03b1\u03c5\u03c4\u03ae \u03ba\u03b1\u03b9 \u03c4\u03b9\u03c2 \u03b7\u03bc\u03ad\u03c1\u03b5\u03c2 \u03b3\u03cd\u03c1\u03c9 \u03b1\u03c0\u03cc \u03b1\u03c5\u03c4\u03ae\u03bd, \u03b5\u03ba\u03b1\u03c4\u03bf\u03bd\u03c4\u03ac\u03b4\u03b5\u03c2 \u03bf\u03c1\u03b3\u03b1\u03bd\u03ce\u03c3\u03b5\u03b9\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03b1\u03c0\u03cc \u03c7\u03ce\u03c1\u03b5\u03c2 \u03ba\u03b1\u03b9 \u03c0\u03b5\u03c1\u03b9\u03bf\u03c7\u03ad\u03c2 \u03c3\u03b5 \u03cc\u03bb\u03bf \u03c4\u03bf\u03bd \u03ba\u03cc\u03c3\u03bc\u03bf \u03b8\u03b1 \u03b4\u03b9\u03bf\u03c1\u03b3\u03b1\u03bd\u03ce\u03c3\u03bf\u03c5\u03bd \u03b4\u03c1\u03ac\u03c3\u03b5\u03b9\u03c2 \u03b5\u03c5\u03b1\u03b9\u03c3\u03b8\u03b7\u03c4\u03bf\u03c0\u03bf\u03af\u03b7\u03c3\u03b7\u03c2.<\/p>\n<p>Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, less than 1,000 people suffer from\u00a0Erdheim-Chester Disease worldwide.<\/p>\n<p><strong>\u0393\u03af\u03bd\u03b5\u03c4\u03b5 \u03bc\u03ad\u03bb\u03bf\u03c2 \u03c4\u03b7\u03c2 ECD Global Alliance \u03ba\u03b1\u03b9 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03bb\u03b5\u03c4\u03b5 \u03c3\u03c4\u03b7\u03bd \u03b5\u03c5\u03b1\u03b9\u03c3\u03b8\u03b7\u03c4\u03bf\u03c0\u03bf\u03af\u03b7\u03c3\u03b7 \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2, \u03bc\u03bf\u03b9\u03c1\u03b1\u03b6\u03cc\u03bc\u03b5\u03bd\u03bf\u03b9 \u03c4\u03b7\u03bd \u03b5\u03bc\u03c0\u03b5\u03b9\u03c1\u03af\u03b1 \u03c3\u03b1\u03c2 \u03bc\u03b5 \u03c4\u03b7\u03bd ECD.<\/strong><\/p>\n<p><a href=\"https:\/\/twitter.com\/intent\/tweet?url=https%3A\/\/youtu.be\/3bxaP9FJKnk&amp;text=Rare%20Disease%20Day%202021%20official%20video&amp;via=YouTube&amp;related=YouTube,YouTubeTrends,YTCreators\" target=\"_blank\" rel=\"noopener noreferrer\">\u0395\u03c0\u03af\u03c3\u03b7\u03bc\u03bf \u03b2\u03af\u03bd\u03c4\u03b5\u03bf \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u0397\u03bc\u03ad\u03c1\u03b1 \u03c4\u03c9\u03bd \u03a3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03a0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd\u00a0<\/a><\/p>\n<p>Find more resources and ways to raise awareness on our <a title=\"\u0394\u03b9\u03b1\u03b4\u03ce\u03c3\u03c4\u03b5 \u03c4\u03bf \u03bc\u03ae\u03bd\u03c5\u03bc\u03b1\" href=\"https:\/\/www.erdheim-chester.org\/el\/%ce%b4%ce%b9%ce%b1%ce%b4%cf%8e%cf%83%cf%84%ce%b5-%cf%84%ce%bf\/\">\u0394\u03b9\u03b1\u03b4\u03ce\u03c3\u03c4\u03b5 \u03c4\u03bf \u03bc\u03ae\u03bd\u03c5\u03bc\u03b1<\/a> \u03b9\u03c3\u03c4\u03bf\u03c3\u03b5\u03bb\u03af\u03b4\u03b1 \u03ae \u03c3\u03c4\u03bf <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">\u0399\u03c3\u03c4\u03bf\u03c3\u03b5\u03bb\u03af\u03b4\u03b1 \u03c4\u03b7\u03c2 \u0397\u03bc\u03ad\u03c1\u03b1\u03c2 \u03a3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03a0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd<\/a>.<\/p>\n<p>Share your day with us on media, by tagging @ECDGA on Facebook and using #ECDawareness on any media site. We would appreciate it if you would also contact us to use your story, quote, photo, and\/or post on ECDGA&#8217;s media pages.<\/p>\n<p><strong>\u0394\u03b9\u03b1\u03b2\u03ac\u03c3\u03c4\u03b5 \u03c4\u03b7\u03bd \u03c0\u03b9\u03bf \u03c0\u03c1\u03cc\u03c3\u03c6\u03b1\u03c4\u03b7 \u03b9\u03c3\u03c4\u03bf\u03c1\u03af\u03b1 \u03b1\u03c3\u03b8\u03b5\u03bd\u03bf\u03cd\u03c2 \u03bc\u03b1\u03c2, \u03c0\u03bf\u03c5 \u03b4\u03b7\u03bc\u03bf\u03c3\u03b9\u03b5\u03cd\u03c4\u03b7\u03ba\u03b5 \u03bc\u03b5 \u03b1\u03c6\u03bf\u03c1\u03bc\u03ae \u03c4\u03b7 \u03c6\u03b5\u03c4\u03b9\u03bd\u03ae \u0397\u03bc\u03ad\u03c1\u03b1 \u03a3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03a0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd: <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/A-Spiritual-Journey-Through-ECD-Dean-William.pdf\">\u0388\u03bd\u03b1 \u03c0\u03bd\u03b5\u03c5\u03bc\u03b1\u03c4\u03b9\u03ba\u03cc \u03c4\u03b1\u03be\u03af\u03b4\u03b9 \u03bc\u03ad\u03c3\u03b1 \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd \u03a0\u03c1\u03ce\u03b9\u03bc\u03b7 \u03a0\u03b1\u03b9\u03b4\u03b9\u03ba\u03ae \u0391\u03bd\u03ac\u03c0\u03c4\u03c5\u03be\u03b7 (ECD)<\/a><\/strong><\/p>\n<p><strong>\u039c\u03bf\u03b9\u03c1\u03b1\u03c3\u03c4\u03b5\u03af\u03c4\u03b5 \u03b1\u03c5\u03c4\u03cc \u03c4\u03bf \u03c6\u03c5\u03bb\u03bb\u03ac\u03b4\u03b9\u03bf \u03c3\u03c4\u03b9\u03c2 \u03c3\u03b5\u03bb\u03af\u03b4\u03b5\u03c2 \u03c3\u03b1\u03c2 \u03c3\u03c4\u03b1 \u03bc\u03ad\u03c3\u03b1 \u03ba\u03bf\u03b9\u03bd\u03c9\u03bd\u03b9\u03ba\u03ae\u03c2 \u03b4\u03b9\u03ba\u03c4\u03cd\u03c9\u03c3\u03b7\u03c2 \u03ae \u03bc\u03ad\u03c3\u03c9 email <\/strong><strong>\u03bc\u03b5 \u03c4\u03bf\u03c5\u03c2 \u03b5\u03c0\u03b1\u03c6\u03ad\u03c2 \u03c3\u03b1\u03c2!<\/strong><\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-175289 size-full alignleft\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg\" alt=\"\" width=\"232\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg 232w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1-9x12.jpg 9w\" sizes=\"(max-width: 232px) 100vw, 232px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><em><strong>\u038c,\u03c4\u03b9 \u03ba\u03b9 \u03b1\u03bd \u03ba\u03ac\u03bd\u03b5\u03c4\u03b5 \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u0397\u03bc\u03ad\u03c1\u03b1 \u03a3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03a0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd, \u03b7 \u03bf\u03bc\u03ac\u03b4\u03b1 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03ae\u03c2 \u03c3\u03b1\u03c2 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b5\u03b4\u03ce \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03c3\u03b1\u03c2 \u03c3\u03c4\u03b7\u03c1\u03af\u03be\u03b5\u03b9 \u03c3\u03b5 \u03b1\u03c5\u03c4\u03ae \u03c4\u03b7\u03bd \u03c0\u03bf\u03c1\u03b5\u03af\u03b1! \u03a3\u03b1\u03c2 \u03b5\u03c5\u03c7\u03b1\u03c1\u03b9\u03c3\u03c4\u03bf\u03cd\u03bc\u03b5 \u03c0\u03bf\u03c5 \u03c6\u03bf\u03c1\u03ac\u03c4\u03b5 \u03bc\u03b5 \u03c5\u03c0\u03b5\u03c1\u03b7\u03c6\u03ac\u03bd\u03b5\u03b9\u03b1 \u03c4\u03b7\u03bd \u03ba\u03bf\u03c1\u03b4\u03ad\u03bb\u03b1 \u03c3\u03b1\u03c2 \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03b9\u03c2!<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":19553,"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":[51,70],"tags":[55,101,83,54,59,53,58,56,69,57,82,52,75],"class_list":["post-19549","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research-awareness","tag-advocacy","tag-awareness","tag-blood-cancer","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-rare-cancer","tag-rare-disease","tag-rare-disease-day"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/19549","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\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}