{"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":"%d7%99%d7%95%d7%9d-%d7%94%d7%9e%d7%97%d7%9c%d7%95%d7%aa-%d7%94%d7%a0%d7%93%d7%99%d7%a8%d7%95%d7%aa-2024","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/2021-rare-disease-day\/","title":{"rendered":"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea 2021"},"content":{"rendered":"<h1><strong>\u05de\u05d4\u05d5 \"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\"?<\/strong><\/h1>\n<p><em>28 \u05d1\u05e4\u05d1\u05e8\u05d5\u05d0\u05e8 2021<\/em>, \u05d9\u05d4\u05d9\u05d4 \u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea \u05d4\u05d1\u05d9\u05e0\u05dc\u05d0\u05d5\u05de\u05d9 \u05d4-14, \u05d4\u05de\u05ea\u05d5\u05d0\u05dd \u05e2\u05dc \u05d9\u05d3\u05d9 EURORDIS. \u05d1\u05d9\u05d5\u05dd \u05d6\u05d4 \u05d5\u05d1\u05e1\u05d1\u05d9\u05d1\u05ea\u05d5, \u05de\u05d0\u05d5\u05ea \u05d0\u05e8\u05d2\u05d5\u05e0\u05d9 \u05d7\u05d5\u05dc\u05d9\u05dd \u05de\u05de\u05d3\u05d9\u05e0\u05d5\u05ea \u05d5\u05d0\u05d6\u05d5\u05e8\u05d9\u05dd \u05d1\u05db\u05dc \u05e8\u05d7\u05d1\u05d9 \u05d4\u05e2\u05d5\u05dc\u05dd \u05d9\u05e7\u05d9\u05d9\u05de\u05d5 \u05e4\u05e2\u05d9\u05dc\u05d5\u05d9\u05d5\u05ea \u05dc\u05d4\u05e2\u05dc\u05d0\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea.<\/p>\n<p>\u05db-300 \u05de\u05d9\u05dc\u05d9\u05d5\u05df \u05d0\u05e0\u05e9\u05d9\u05dd (\u05db-5% \u05de\u05d4\u05d0\u05d5\u05db\u05dc\u05d5\u05e1\u05d9\u05d9\u05d4) \u05e1\u05d5\u05d1\u05dc\u05d9\u05dd \u05de\u05de\u05d7\u05dc\u05d4 \u05e0\u05d3\u05d9\u05e8\u05d4. \u05de\u05ea\u05d5\u05da \u05d4-5% \u05d4\u05dc\u05dc\u05d5, \u05e4\u05d7\u05d5\u05ea \u05de-1,000 \u05d0\u05e0\u05e9\u05d9\u05dd \u05d1\u05e8\u05d7\u05d1\u05d9 \u05d4\u05e2\u05d5\u05dc\u05dd \u05e1\u05d5\u05d1\u05dc\u05d9\u05dd \u05de\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8.<\/p>\n<p><strong>\u05d4\u05e6\u05d8\u05e8\u05e4\u05d5 \u05dc-ECD Global Alliance \u05d1\u05de\u05d0\u05de\u05e5 \u05dc\u05d4\u05d2\u05d1\u05d9\u05e8 \u05d0\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea \u05dc\u05de\u05d7\u05dc\u05d5\u05ea \u05e0\u05d3\u05d9\u05e8\u05d5\u05ea, \u05e2\u05dc \u05d9\u05d3\u05d9 \u05e9\u05d9\u05ea\u05d5\u05e3 \u05d4\u05d7\u05d5\u05d5\u05d9\u05d4 \u05e9\u05dc\u05db\u05dd \u05e2\u05dd 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\">\u05d4\u05e1\u05e8\u05d8\u05d5\u05df \u05d4\u05e8\u05e9\u05de\u05d9 \u05e9\u05dc \u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\u00a0<\/a><\/p>\n<p>\u05ea\u05d5\u05db\u05dc\u05d5 \u05dc\u05de\u05e6\u05d5\u05d0 \u05de\u05e9\u05d0\u05d1\u05d9\u05dd \u05e0\u05d5\u05e1\u05e4\u05d9\u05dd \u05d5\u05d3\u05e8\u05db\u05d9\u05dd \u05dc\u05d4\u05d2\u05d1\u05e8\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea \u05d1\u05d0\u05ea\u05e8 \u05e9\u05dc\u05e0\u05d5 <a title=\"\u05d4\u05e4\u05d9\u05e6\u05d5 \u05d0\u05ea \u05d4\u05d1\u05e9\u05d5\u05e8\u05d4\" href=\"https:\/\/www.erdheim-chester.org\/he\/%d7%94%d7%a4%d7%99%d7%a6%d7%95-%d7%90%d7%aa-%d7%94%d7%91%d7%a9%d7%95%d7%a8%d7%94-2\/\">\u05d4\u05e4\u05d9\u05e6\u05d5 \u05d0\u05ea \u05d4\u05d1\u05e9\u05d5\u05e8\u05d4<\/a> \u05d1\u05d3\u05e3 \u05d4\u05d0\u05d9\u05e0\u05d8\u05e8\u05e0\u05d8 \u05d0\u05d5 \u05d1- <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">\u05d0\u05ea\u05e8 \"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\"<\/a>.<\/p>\n<p>\u05e9\u05ea\u05e4\u05d5 \u05d0\u05d5\u05ea\u05e0\u05d5 \u05d1\u05d7\u05d5\u05d5\u05d9\u05d5\u05ea\u05d9\u05db\u05dd \u05d1\u05e8\u05e9\u05ea\u05d5\u05ea \u05d4\u05d7\u05d1\u05e8\u05ea\u05d9\u05d5\u05ea, \u05e2\u05dc \u05d9\u05d3\u05d9 \u05ea\u05d9\u05d5\u05d2 @ECDGA \u05d1\u05e4\u05d9\u05d9\u05e1\u05d1\u05d5\u05e7 \u05d5\u05e9\u05d9\u05de\u05d5\u05e9 \u05d1\u05d4\u05d0\u05e9\u05d8\u05d2 #ECDawareness \u05d1\u05db\u05dc \u05e4\u05dc\u05d8\u05e4\u05d5\u05e8\u05de\u05ea \u05de\u05d3\u05d9\u05d4 \u05d7\u05d1\u05e8\u05ea\u05d9\u05ea. \u05e0\u05e9\u05de\u05d7 \u05d0\u05dd \u05ea\u05d9\u05e6\u05e8\u05d5 \u05d0\u05d9\u05ea\u05e0\u05d5 \u05e7\u05e9\u05e8 \u05db\u05d3\u05d9 \u05e9\u05e0\u05d5\u05db\u05dc \u05dc\u05e4\u05e8\u05e1\u05dd \u05d0\u05ea \u05d4\u05e1\u05d9\u05e4\u05d5\u05e8, \u05d4\u05e6\u05d9\u05d8\u05d5\u05d8, \u05d4\u05ea\u05de\u05d5\u05e0\u05d4 \u05d5\/\u05d0\u05d5 \u05d4\u05e4\u05d5\u05e1\u05d8 \u05e9\u05dc\u05db\u05dd \u05d1\u05e2\u05de\u05d5\u05d3\u05d9 \u05d4\u05de\u05d3\u05d9\u05d4 \u05e9\u05dc ECDGA.<\/p>\n<p><strong>\u05e7\u05e8\u05d0\u05d5 \u05d0\u05ea \u05e1\u05d9\u05e4\u05d5\u05e8 \u05d4\u05de\u05d8\u05d5\u05e4\u05dc \u05d4\u05d7\u05d3\u05e9 \u05d1\u05d9\u05d5\u05ea\u05e8 \u05e9\u05dc\u05e0\u05d5, \u05e9\u05e4\u05d5\u05e8\u05e1\u05dd \u05dc\u05e8\u05d2\u05dc \"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\" \u05d4\u05e9\u05e0\u05d4: <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/A-Spiritual-Journey-Through-ECD-Dean-William.pdf\">\u05de\u05e1\u05e2 \u05e8\u05d5\u05d7\u05e0\u05d9 \u05d3\u05e8\u05da \u05d4-ECD<\/a><\/strong><\/p>\n<p><strong>\u05e9\u05ea\u05e4\u05d5 \u05d0\u05ea \u05d4\u05e2\u05dc\u05d5\u05df \u05d4\u05d6\u05d4 \u05d1\u05e2\u05de\u05d5\u05d3\u05d9 \u05d4\u05de\u05d3\u05d9\u05d4 \u05d4\u05d7\u05d1\u05e8\u05ea\u05d9\u05ea \u05e9\u05dc\u05db\u05dd \u05d0\u05d5 \u05d1\u05d0\u05de\u05e6\u05e2\u05d5\u05ea \u05d3\u05d5\u05d0\"\u05dc <\/strong><strong>\u05e2\u05dd \u05d0\u05e0\u05e9\u05d9 \u05d4\u05e7\u05e9\u05e8 \u05e9\u05dc\u05db\u05dd!<\/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>\u05dc\u05d0 \u05de\u05e9\u05e0\u05d4 \u05de\u05d4 \u05ea\u05e2\u05e9\u05d5 \u05d1\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea \u05d4\u05d6\u05d4, \u05d0\u05e8\u05d2\u05d5\u05df \u05d4\u05ea\u05de\u05d9\u05db\u05d4 \u05e9\u05dc\u05db\u05dd \u05db\u05d0\u05df \u05db\u05d3\u05d9 \u05dc\u05ea\u05de\u05d5\u05da \u05d1\u05db\u05dd \u05dc\u05d0\u05d5\u05e8\u05da \u05d4\u05d3\u05e8\u05da! \u05ea\u05d5\u05d3\u05d4 \u05dc\u05db\u05dd \u05e2\u05dc \u05e9\u05d0\u05ea\u05dd \u05e2\u05d5\u05e0\u05d3\u05d9\u05dd \u05d0\u05ea \u05d4\u05e1\u05e8\u05d8 \u05e9\u05dc \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea \u05d1\u05d2\u05d0\u05d5\u05d5\u05d4!<\/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":"","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\/he\/wp-json\/wp\/v2\/posts\/19549","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=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}