{"id":114257,"date":"2026-02-13T08:01:38","date_gmt":"2026-02-13T14:01:38","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/what-does-rare-really-mean\/"},"modified":"2026-02-13T08:01:38","modified_gmt":"2026-02-13T14:01:38","slug":"%d7%9e%d7%94-%d7%94%d7%9e%d7%a9%d7%9e%d7%a2%d7%95%d7%aa-%d7%94%d7%90%d7%9e%d7%99%d7%aa%d7%99%d7%aa-%d7%a9%d7%9c-%d7%94%d7%9e%d7%99%d7%9c%d7%94-%d7%a0%d7%93%d7%99%d7%a8","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/what-does-rare-really-mean\/","title":{"rendered":"\u05de\u05d4 \u05d4\u05de\u05e9\u05de\u05e2\u05d5\u05ea \u05d4\u05d0\u05de\u05d9\u05ea\u05d9\u05ea \u05e9\u05dc \u05d4\u05de\u05d9\u05dc\u05d4 \u201c\u05e0\u05d3\u05d9\u05e8\u201d?"},"content":{"rendered":"<p>\u05d1\u05e2\u05d5\u05d3\u05e0\u05d5 \u05de\u05ea\u05db\u05d5\u05e0\u05e0\u05d9\u05dd \u05dc\"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\", \u05d6\u05d4\u05d5 \u05d6\u05de\u05df \u05d8\u05d5\u05d1 \u05dc\u05e9\u05d0\u05d5\u05dc \u05e9\u05d0\u05dc\u05d4 \u05e4\u05e9\u05d5\u05d8\u05d4:&nbsp;<\/p>\n<p>\u05de\u05d4 \u05d4\u05de\u05e9\u05de\u05e2\u05d5\u05ea \u05d4\u05d0\u05de\u05d9\u05ea\u05d9\u05ea \u05e9\u05dc \u05d4\u05de\u05d9\u05dc\u05d4 \u201c\u05e0\u05d3\u05d9\u05e8\u201d?&nbsp;<\/p>\n<p>\u05d1\u05d0\u05e8\u05d4\u201c\u05d1, \u05de\u05d7\u05dc\u05d4 \u05e0\u05d7\u05e9\u05d1\u05ea \u05dc\u05e0\u05d3\u05d9\u05e8\u05d4 \u05d0\u05dd \u05d4\u05d9\u05d0 \u05e4\u05d5\u05d2\u05e2\u05ea \u05d1\u05e4\u05d7\u05d5\u05ea \u05de-200,000 \u05d0\u05e0\u05e9\u05d9\u05dd, \u05e2\u05dc \u05e4\u05d9 \u05d4\u05d0\u05e8\u05d2\u05d5\u05df \u05d4\u05dc\u05d0\u05d5\u05de\u05d9 \u05dc\u05de\u05d7\u05dc\u05d5\u05ea \u05e0\u05d3\u05d9\u05e8\u05d5\u05ea (NORD). \u05d0\u05da \u05e2\u05d1\u05d5\u05e8 \u05de\u05e9\u05e4\u05d7\u05d5\u05ea \u05d4\u05de\u05ea\u05de\u05d5\u05d3\u05d3\u05d5\u05ea \u05e2\u05dd \u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8 (ECD), \u05d4\u05de\u05d5\u05e9\u05d2 \u201d\u05e0\u05d3\u05d9\u05e8\" \u05de\u05e8\u05d2\u05d9\u05e9 \u05dc\u05e2\u05ea\u05d9\u05dd \u05e7\u05e8\u05d5\u05d1\u05d5\u05ea \u05d0\u05d9\u05e9\u05d9 \u05d4\u05e8\u05d1\u05d4 \u05d9\u05d5\u05ea\u05e8.&nbsp;<\/p>\n<p>\u05d0\u05d6 \u05e2\u05d3 \u05db\u05de\u05d4 \u05e0\u05d3\u05d9\u05e8 \u05d4\u05d5\u05d0 ECD \u05d1\u05d0\u05e8\u05e6\u05d5\u05ea \u05d4\u05d1\u05e8\u05d9\u05ea?&nbsp;<\/p>\n<p>\u05de\u05d7\u05e7\u05e8 \u05e9\u05e0\u05e2\u05e8\u05da \u05dc\u05d0\u05d7\u05e8\u05d5\u05e0\u05d4 \u05d1\u05d0\u05e8\u05e6\u05d5\u05ea \u05d4\u05d1\u05e8\u05d9\u05ea \u05d1\u05d4\u05d5\u05d1\u05dc\u05ea\u05d5 \u05e9\u05dc \u05d3\"\u05e8 \u05e8\u05d5\u05e0\u05dc\u05d3 \u05d2\u05d5 \u05de\u05d8\u05e2\u05dd \u05e8\u05e9\u05ea Histio-Care Network \u05de\u05e1\u05d9\u05d9\u05e2 \u05dc\u05d4\u05e6\u05d9\u05d2 \u05d0\u05ea \u05d4\u05e0\u05ea\u05d5\u05e0\u05d9\u05dd \u05d1\u05e4\u05e8\u05e1\u05e4\u05e7\u05d8\u05d9\u05d1\u05d4 \u05d4\u05e0\u05db\u05d5\u05e0\u05d4. \u05d1\u05d4\u05e1\u05ea\u05de\u05da \u05e2\u05dc \u05e0\u05ea\u05d5\u05e0\u05d9 \u05d4\u05e8\u05d9\u05e9\u05d5\u05dd \u05d4\u05dc\u05d0\u05d5\u05de\u05d9 \u05dc\u05e1\u05e8\u05d8\u05df (SEER), \u05d4\u05de\u05d7\u05e7\u05e8 \u05d3\u05d9\u05d5\u05d5\u05d7 \u05e2\u05dc \u05e9\u05d9\u05e2\u05d5\u05e8 \u05ea\u05d7\u05dc\u05d5\u05d0\u05d4 \u05db\u05d5\u05dc\u05dc \u05e9\u05dc 1.3 \u05de\u05e7\u05e8\u05d9\u05dd \u05d7\u05d3\u05e9\u05d9\u05dd \u05e9\u05dc ECD \u05dc\u05db\u05dc 10 \u05de\u05d9\u05dc\u05d9\u05d5\u05df \u05ea\u05d5\u05e9\u05d1\u05d9\u05dd \u05d1\u05d0\u05e8\u05d4\"\u05d1.<\/p>\n<p>That number helps explain why ECD is so often misunderstood and why diagnosis can take so long.&nbsp;<\/p>\n<p>\u05d1-ECD Global Alliance (ECDGA) \u05d0\u05e0\u05d5 \u05e4\u05d5\u05e2\u05dc\u05d9\u05dd \u05de\u05d3\u05d9 \u05d9\u05d5\u05dd \u05db\u05d3\u05d9 \u05dc\u05d4\u05d1\u05d8\u05d9\u05d7 \u05e9\"\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\" \u05dc\u05d0 \u05ea\u05d4\u05d9\u05d4 \u05e9\u05dd \u05e0\u05e8\u05d3\u05e3 \u05dc\"\u05d1\u05d9\u05d3\u05d5\u05d3\". \u05d1\u05d0\u05de\u05e6\u05e2\u05d5\u05ea \u05d4\u05e2\u05dc\u05d0\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea, \u05ea\u05de\u05d9\u05db\u05d4 \u05d1\u05de\u05d7\u05e7\u05e8 \u05d5\u05d7\u05d9\u05d1\u05d5\u05e8 \u05d1\u05d9\u05df \u05d7\u05d5\u05dc\u05d9\u05dd \u05d5\u05de\u05e9\u05e4\u05d7\u05d5\u05ea \u05d1\u05e8\u05d7\u05d1\u05d9 \u05d4\u05e2\u05d5\u05dc\u05dd, \u05d0\u05e0\u05d5 \u05ea\u05d5\u05e8\u05de\u05d9\u05dd \u05dc\u05db\u05da \u05e9\u05d0\u05e0\u05e9\u05d9\u05dd \u05d4\u05d7\u05d9\u05d9\u05dd \u05e2\u05dd ECD \u05d9\u05d6\u05db\u05d5 \u05dc\u05d4\u05db\u05e8\u05d4, \u05d9\u05d0\u05d5\u05d1\u05d7\u05e0\u05d5 \u05de\u05d5\u05e7\u05d3\u05dd \u05d9\u05d5\u05ea\u05e8 \u05d5\u05d9\u05e7\u05d1\u05dc\u05d5 \u05ea\u05de\u05d9\u05db\u05d4 \u05d1\u05db\u05dc \u05e9\u05dc\u05d1 \u05d5\u05e9\u05dc\u05d1.&nbsp;<\/p>\n<p>ECD \u05d0\u05d5\u05dc\u05d9 \u05e0\u05d3\u05d9\u05e8 \u2014 \u05d0\u05da \u05d4\u05e7\u05d4\u05d9\u05dc\u05d4 \u05d4\u05d6\u05d5 \u05d7\u05d6\u05e7\u05d4.<\/p>\n<p>\u05d1\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea \u05d5\u05d1\u05db\u05dc \u05d9\u05d5\u05dd, \u05ea\u05d5\u05d3\u05d4 \u05dc\u05db\u05dd \u05e2\u05dc \u05d4\u05e9\u05ea\u05ea\u05e4\u05d5\u05ea\u05db\u05dd.<\/p>","protected":false},"excerpt":{"rendered":"<p>As we prepare for &nbsp;Rare Disease Day, it\u2019s a good time to ask a simple question:&nbsp; What does \u201crare\u201d really mean?&nbsp; In the U.S., a disease is considered rare if [&hellip;]<\/p>\n","protected":false},"author":24,"featured_media":114256,"comment_status":"closed","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],"tags":[],"class_list":["post-114257","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/114257","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\/24"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=114257"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/114257\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/114256"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=114257"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=114257"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=114257"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}