{"id":20009,"date":"2021-12-16T10:55:16","date_gmt":"2021-12-16T16:55:16","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=20009"},"modified":"2026-08-19T06:21:47","modified_gmt":"2026-08-19T11:21:47","slug":"%d7%97%d7%93%d7%a9%d7%95%d7%aa-%d7%9c%d7%a1%d7%95%d7%a3-%d7%a9%d7%a0%d7%aa-2021","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/2021-year-end-news\/","title":{"rendered":"\u05d7\u05d3\u05e9\u05d5\u05ea \u05e1\u05d5\u05e3 \u05d4\u05e9\u05e0\u05d4 2021"},"content":{"rendered":"<h2>\u05e9\u05e0\u05d4 \u05d7\u05d3\u05e9\u05d4 \u05d5\u05de\u05dc\u05d0\u05ea \u05ea\u05e7\u05d5\u05d5\u05d4 \u05de\u05ea\u05e7\u05e8\u05d1\u05ea \u05dc\u05e7\u05d4\u05d9\u05dc\u05ea \u05d4-ECD!<\/h2>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/08\/2021-Year-End-Newsletter-online.pdf\">\u05e6\u05e4\u05d5 \u05d1\u05e2\u05dc\u05d5\u05df \u05e1\u05d9\u05db\u05d5\u05dd \u05d4\u05e9\u05e0\u05d4 \u05dc\u05e9\u05e0\u05ea 2021.<\/a><\/p>\n<p>\u05d4\u05d1\u05e8\u05d9\u05ea \u05d4\u05d2\u05dc\u05d5\u05d1\u05dc\u05d9\u05ea \u05dc\u05de\u05d7\u05dc\u05ea ECD \u05de\u05d2\u05d9\u05e2\u05d4 \u05dc\u05e8\u05de\u05d5\u05ea \u05d7\u05d3\u05e9\u05d5\u05ea \u05e9\u05dc \u05ea\u05de\u05d9\u05db\u05d4 \u05d1\u05d0\u05dc\u05d4 \u05d4\u05e0\u05dc\u05d7\u05de\u05d9\u05dd \u05d1\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8 \u05d1\u05d0\u05de\u05e6\u05e2\u05d5\u05ea \u05e7\u05de\u05e4\u05d9\u05d9\u05df \u05ea\u05e8\u05d5\u05de\u05d5\u05ea \u05ea\u05d5\u05d0\u05de\u05d5\u05ea \u05d1\u05d0\u05de\u05e6\u05e2\u05d5\u05ea<strong> 31 \u05d1\u05d3\u05e6\u05de\u05d1\u05e8 2021<\/strong>!\u00a0 Thanks to an <strong>$80,000 \u05ea\u05e8\u05d5\u05de\u05d4 \u05ea\u05d5\u05d0\u05de\u05ea<\/strong> \u05de\u05d0\u05ea \u05e7\u05d1\u05d5\u05e6\u05d4 \u05e9\u05dc \u05d7\u05d1\u05e8\u05d9 \u05d4\u05e0\u05d4\u05dc\u05ea ECDGA \u05d5\u05ea\u05d5\u05e8\u05de\u05d9\u05dd \u05e0\u05d3\u05d9\u05d1\u05d9\u05dd \u2013 \u05d4\u05e9\u05e4\u05e2\u05ea\u05db\u05dd \u05e2\u05dc \u05e4\u05e2\u05d9\u05dc\u05d5\u05ea\u05e0\u05d5 \u05d4\u05d7\u05d9\u05d5\u05e0\u05d9\u05ea \u05ea\u05d2\u05d9\u05e2 \u05e8\u05d7\u05d5\u05e7 \u05e4\u05d9 \u05e9\u05e0\u05d9\u05d9\u05dd.<\/p>\n<p>\u05d1\u05e2\u05d6\u05e8\u05ea \u05d4\u05ea\u05e8\u05d5\u05de\u05d4 \u05e9\u05dc\u05db\u05dd, \u05e0\u05d5\u05db\u05dc \u05dc\u05d4\u05d1\u05d8\u05d9\u05d7 \u05e2\u05ea\u05d9\u05d3 \u05d8\u05d5\u05d1 \u05d9\u05d5\u05ea\u05e8 \u05dc\u05db\u05dc \u05de\u05d9 \u05e9\u05e0\u05e4\u05d2\u05e2 \u05de\u05d4\u05e4\u05e8\u05e2\u05ea ECD. \u05d0\u05e0\u05d0 \u05ea\u05e8\u05de\u05d5 \u05e2\u05d5\u05d3 \u05d4\u05d9\u05d5\u05dd \u05db\u05d3\u05d9 \u05dc\u05d7\u05d6\u05e7 \u05d0\u05ea \u05e4\u05e2\u05d9\u05dc\u05d5\u05ea\u05e0\u05d5 \u05d1\u05e9\u05e0\u05d4 \u05d4\u05e7\u05e8\u05d5\u05d1\u05d4\u2026 \u05d5\u05d3\u05e2\u05d5 \u05e9\u05ea\u05e2\u05e9\u05d5 \u05d8\u05d5\u05d1 \u05db\u05e4\u05d5\u05dc! \u00a0<strong><a href=\"https:\/\/www.erdheim-chester.org\/he\/donate-2\/\">\u05d4\u05db\u05e4\u05d9\u05dc\u05d5 \u05d0\u05ea \u05ea\u05e8\u05d5\u05de\u05ea\u05db\u05dd \u05e2\u05d5\u05d3 \u05d4\u05d9\u05d5\u05dd!<\/a>\u00a0<\/strong><\/p>\n<p>\u05de\u05d4 \u05d4\u05ea\u05e8\u05d5\u05de\u05d4 \u05e9\u05dc\u05db\u05dd \u05de\u05d0\u05e4\u05e9\u05e8\u05ea:<\/p>\n<ul>\n<li><strong>\u05de\u05d7\u05e7\u05e8 \u2013 <\/strong>\u05de\u05d9\u05de\u05d5\u05df \u05d4\u05de\u05d7\u05e7\u05e8 \u05d1\u05e0\u05d5\u05e9\u05d0 \u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8 \u05e2\u05d5\u05de\u05d3 \u05d1\u05e8\u05d0\u05e9 \u05e1\u05d3\u05e8 \u05d4\u05e2\u05d3\u05d9\u05e4\u05d5\u05d9\u05d5\u05ea \u05e9\u05dc \u05d4\u05de\u05e9\u05d9\u05de\u05d4 \u05e9\u05dc\u05e0\u05d5. \u05e4\u05e8\u05e1 \u05de\u05e2\u05e0\u05e7 \u05d4\u05de\u05d7\u05e7\u05e8 \u05e9\u05dc ECD \u05dc\u05e9\u05e0\u05ea 2021 \u05d9\u05d5\u05db\u05e8\u05d6 \u05d1\u05e7\u05e8\u05d5\u05d1!<\/li>\n<li><strong>\u05d7\u05d9\u05e0\u05d5\u05da \u2013 <\/strong>\u05d4\u05d4\u05db\u05e9\u05e8\u05d4 \u05d4\u05e8\u05e4\u05d5\u05d0\u05d9\u05ea \u05de\u05ea\u05d1\u05e6\u05e2\u05ea \u05d1\u05d0\u05de\u05e6\u05e2\u05d5\u05ea \u05db\u05e0\u05e1\u05d9\u05dd \u05d1\u05d9\u05e0\u05dc\u05d0\u05d5\u05de\u05d9\u05d9\u05dd, \u05e1\u05de\u05d9\u05e0\u05e8\u05d9\u05dd \u05de\u05e7\u05d5\u05d5\u05e0\u05d9\u05dd, \u05e4\u05e2\u05d9\u05dc\u05d5\u05d9\u05d5\u05ea \u05d4\u05e1\u05d1\u05e8\u05d4 \u05d1\u05ea\u05d7\u05d5\u05de\u05d9 \u05d4\u05ea\u05de\u05d7\u05d5\u05ea \u05e8\u05e4\u05d5\u05d0\u05d9\u05d9\u05dd \u05d5\u05e2\u05d5\u05d3.<\/li>\n<li><strong>\u05ea\u05de\u05d9\u05db\u05d4 \u2013 <\/strong>\u05d4\u05d9\u05db\u05d5\u05dc\u05ea \u05dc\u05e1\u05e4\u05e7 \u05dc\u05d7\u05d5\u05dc\u05d9\u05dd \u05d5\u05dc\u05de\u05e9\u05e4\u05d7\u05d5\u05ea\u05d9\u05d4\u05dd \u05d0\u05ea \u05d4\u05db\u05dc\u05d9\u05dd \u05d5\u05d4\u05e7\u05e9\u05e8\u05d9\u05dd \u05d4\u05d3\u05e8\u05d5\u05e9\u05d9\u05dd \u05dc\u05d4\u05dd \u05db\u05d3\u05d9 \u05dc\u05d3\u05d0\u05d5\u05d2 \u05dc\u05e2\u05e6\u05de\u05dd \u05d4\u05d9\u05d0 \u05d1\u05e2\u05dc\u05ea \u05e2\u05e8\u05da \u05e9\u05dc\u05d0 \u05e0\u05d9\u05ea\u05df \u05dc\u05d0\u05de\u05d5\u05d3. \u05d4\u05ea\u05e8\u05d5\u05de\u05d5\u05ea \u05e9\u05dc\u05db\u05dd \u05dc\u05d0 \u05e8\u05e7 \u05e2\u05d5\u05d6\u05e8\u05d5\u05ea \u05dc\u05e7\u05d4\u05d9\u05dc\u05ea \u05d4\u05d7\u05d5\u05dc\u05d9\u05dd \u05d1\u05de\u05d7\u05dc\u05d5\u05ea \u05e0\u05d3\u05d9\u05e8\u05d5\u05ea \u05dc\u05e9\u05d2\u05e9\u05d2. \u05d4\u05ea\u05e8\u05d5\u05de\u05d5\u05ea \u05e9\u05dc\u05db\u05dd \u05de\u05e1\u05e4\u05e7\u05d5\u05ea \u05d2\u05dd \u05de\u05d9\u05de\u05d5\u05df \u05dc\u05de\u05d7\u05e7\u05e8, \u05d4\u05ea\u05d5\u05e8\u05dd \u05dc\u05ea\u05d2\u05dc\u05d9\u05d5\u05ea \u05d1\u05ea\u05d7\u05d5\u05dd \u05d4\u05e1\u05e8\u05d8\u05df \u05d1\u05db\u05dc \u05ea\u05d7\u05d5\u05de\u05d9 \u05d4\u05de\u05d3\u05e2.<\/li>\n<\/ul>\n<div id=\"attachment_175267\" style=\"width: 235px\" class=\"wp-caption alignright\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/12\/Noah-Barone-3-225x300-1.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-175267\" class=\"wp-image-175267 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/12\/Noah-Barone-3-225x300-1.jpg\" alt=\"\" width=\"225\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/12\/Noah-Barone-3-225x300-1.jpg 225w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/12\/Noah-Barone-3-225x300-1-9x12.jpg 9w\" sizes=\"(max-width: 225px) 100vw, 225px\" \/><\/a><p id=\"caption-attachment-175267\" class=\"wp-caption-text\">\u05e0\u05d5\u05d7 \u05de\u05d5\u05db\u05df \u05dc\u05d7\u05d2\u05d9\u05dd! \u05e7\u05e8\u05d0\u05d5 \u05d0\u05ea \u05d4\u05e1\u05d9\u05e4\u05d5\u05e8 \u05e9\u05dc\u05d5 \u05e2\u05dc \u05ea\u05d5\u05db\u05e0\u05d9\u05ea ECD \u05d1\u05ea\u05d5\u05da \u05d4\u05e2\u05dc\u05d5\u05df.<\/p><\/div>\n<h2>\u05d4\u05ea\u05d7\u05d1\u05e8\u05d5 \u05d1\u05e9\u05e0\u05ea 2022<\/h2>\n<p>Over the last two years, the ECD Global Alliance adjusted to the new norms of distancing and travel bans with more online connections.\u00a0 The Annual Patient &amp; Family Gathering was put on hold during this time, making the July 2019 event the last time our ECD family was able to join face-to-face.\u00a0We will continue to press forward with online connections for those that still cannot travel, but will also be offering a live meeting April 7-8, 2022!\u00a0 <a title=\"\u05de\u05e4\u05d2\u05e9 \u05e9\u05e0\u05ea\u05d9 \u05e9\u05dc \u05d4\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd\" href=\"https:\/\/www.erdheim-chester.org\/he\/%d7%9e%d7%a4%d7%92%d7%a9-%d7%9e%d7%a9%d7%a4%d7%97%d7%95%d7%aa-%d7%a9%d7%9c-%d7%9e%d7%98%d7%95%d7%a4%d7%9c%d7%99-%d7%94-ecd\/\">\u05dc\u05de\u05d9\u05d3\u05e2 \u05e0\u05d5\u05e1\u05e3 \u05e2\u05dc \u05d4\u05d0\u05d9\u05e8\u05d5\u05e2 \u05d4\u05d6\u05d4, \u05dc\u05d7\u05e6\u05d5 \u05db\u05d0\u05df.<\/a><\/p>\n<p>As we reflect on the trials and triumphs of our community members, we want to thank the supporters that come through for those fighting every single day.\u00a0 Your support is not just about your loved one, but about the future for all families faced with Erdheim-Chester Disease.\u00a0 Your provisions have come in all forms, and we appreciate everything you do!<\/p>\n<h3><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/12\/2021-Year-End-Newsletter-online.pdf\">\u05e7\u05e8\u05d0\u05d5 \u05e2\u05dc \u05e2\u05d3\u05db\u05d5\u05e0\u05d9\u05dd \u05e0\u05d5\u05e1\u05e4\u05d9\u05dd \u05d1\u05e2\u05dc\u05d5\u05df \u05e1\u05d9\u05db\u05d5\u05dd \u05d4\u05e9\u05e0\u05d4 \u05e9\u05dc\u05e0\u05d5!<\/a><\/h3>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>A new year of hope is on the horizon for the ECD community! View the 2021 Year-End Newsletter. The ECD Global Alliance is reaching new levels of support for those [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":20008,"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":[55,101,83,58,56,103,57,122,168,82,52],"class_list":["post-20009","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-diabetes-insipidus","tag-erdheim-chester","tag-fundraiser","tag-hairy-kidney","tag-histio","tag-matching-gift","tag-rare-cancer","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/20009","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=20009"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/20009\/revisions"}],"predecessor-version":[{"id":175268,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/20009\/revisions\/175268"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/20008"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=20009"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=20009"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=20009"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}