{"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":"2021-%e0%a4%b5%e0%a4%b0%e0%a5%8d%e0%a4%b7-%e0%a4%85%e0%a4%82%e0%a4%a4-%e0%a4%b8%e0%a4%ae%e0%a4%be%e0%a4%9a%e0%a4%be%e0%a4%b0","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/hi\/2021-year-end-news\/","title":{"rendered":"2021 \u0935\u0930\u094d\u0937-\u0905\u0902\u0924 \u0938\u092e\u093e\u091a\u093e\u0930"},"content":{"rendered":"<h2>\u0908\u0938\u0940\u0921\u0940 \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u0947 \u0932\u093f\u090f \u0906\u0936\u093e \u0915\u093e \u090f\u0915 \u0928\u092f\u093e \u0935\u0930\u094d\u0937 \u0915\u094d\u0937\u093f\u0924\u093f\u091c \u092a\u0930 \u0939\u0948!<\/h2>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/08\/2021-Year-End-Newsletter-online.pdf\">2021 \u0915\u093e \u0935\u0930\u094d\u0937-\u0905\u0902\u0924 \u0928\u094d\u092f\u0942\u091c\u093c\u0932\u0947\u091f\u0930 \u0926\u0947\u0916\u0947\u0902\u0964.<\/a><\/p>\n<p>\u0908\u0938\u0940\u0921\u0940 \u0917\u094d\u0932\u094b\u092c\u0932 \u0905\u0932\u093e\u092f\u0902\u0938, \u090f\u0915 \u092e\u093f\u0932\u093e\u0928 \u0909\u092a\u0939\u093e\u0930 \u0905\u092d\u093f\u092f\u093e\u0928 \u0915\u0947 \u092e\u093e\u0927\u094d\u092f\u092e \u0938\u0947, \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u0938\u0947 \u0932\u0921\u093c \u0930\u0939\u0947 \u0932\u094b\u0917\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u0938\u092e\u0930\u094d\u0925\u0928 \u0915\u0947 \u0928\u090f \u0938\u094d\u0924\u0930\u094b\u0902 \u0915\u094b \u091b\u0942 \u0930\u0939\u093e \u0939\u0948\u0964<strong> \u0969\u0967 \u0926\u093f\u0938\u0902\u092c\u0930, \u0968\u0966\u0968\u0967<\/strong>!\u00a0 Thanks to an <strong>$80,000 \u092e\u093f\u0932\u093e\u0928 \u0909\u092a\u0939\u093e\u0930<\/strong> \u0909\u0926\u093e\u0930 ECDGA \u092c\u094b\u0930\u094d\u0921 \u0915\u0947 \u0938\u0926\u0938\u094d\u092f\u094b\u0902 \u0914\u0930 \u092a\u0930\u094b\u092a\u0915\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u0947 \u090f\u0915 \u0938\u092e\u0942\u0939 \u0938\u0947 \u2013 \u0939\u092e\u093e\u0930\u0947 \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u0915\u093e\u0930\u094d\u092f \u092a\u0930 \u0906\u092a\u0915\u093e \u092a\u094d\u0930\u092d\u093e\u0935 \u0926\u094b\u0917\u0941\u0928\u093e \u092a\u094d\u0930\u092d\u093e\u0935\u0940 \u0939\u094b\u0917\u093e\u0964.<\/p>\n<p>\u0906\u092a\u0915\u0947 \u0926\u093e\u0928 \u0938\u0947 \u0939\u092e ECD \u0938\u0947 \u092a\u094d\u0930\u092d\u093e\u0935\u093f\u0924 \u0938\u092d\u0940 \u0915\u0947 \u0932\u093f\u090f \u092d\u0935\u093f\u0937\u094d\u092f \u0915\u094b \u0914\u0930 \u0909\u091c\u094d\u091c\u0935\u0932 \u092c\u0928\u093e \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964 \u0915\u0943\u092a\u092f\u093e \u0906\u091c \u0939\u0940 \u0926\u093e\u0928 \u0915\u0930\u0947\u0902 \u0924\u093e\u0915\u093f \u0906\u0928\u0947 \u0935\u093e\u0932\u0947 \u0935\u0930\u094d\u0937 \u092e\u0947\u0902 \u0939\u092e\u093e\u0930\u093e \u0915\u093e\u0930\u094d\u092f \u0914\u0930 \u092e\u091c\u092c\u0942\u0924 \u0939\u094b \u0938\u0915\u0947\u2026\u0914\u0930 \u091c\u093e\u0928\u093f\u090f \u0915\u093f \u0906\u092a \u0926\u094b\u0917\u0941\u0928\u093e \u092d\u0932\u093e \u0915\u0930\u0947\u0902\u0917\u0947! \u00a0<strong><a href=\"https:\/\/www.erdheim-chester.org\/hi\/donate-2\/\">\u0906\u091c \u0905\u092a\u0928\u093e \u0926\u093e\u0928 \u0926\u094b\u0917\u0941\u0928\u093e \u0915\u0930\u0947\u0902!<\/a>\u00a0<\/strong><\/p>\n<p>\u0906\u092a\u0915\u093e \u0909\u092a\u0939\u093e\u0930 \u092a\u094d\u0930\u0926\u093e\u0928 \u0915\u0930\u0924\u093e \u0939\u0948:<\/p>\n<ul>\n<li><strong>\u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u2013 <\/strong>\u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u092a\u0930 \u0936\u094b\u0927 \u0915\u094b \u0935\u093f\u0924\u094d\u0924 \u092a\u094b\u0937\u093f\u0924 \u0915\u0930\u0928\u093e \u0939\u092e\u093e\u0930\u0947 \u092e\u093f\u0936\u0928 \u0915\u093e \u092e\u0941\u0916\u094d\u092f \u0909\u0926\u094d\u0926\u0947\u0936\u094d\u092f \u0939\u0948\u0964 2021 \u0908\u0938\u0940\u0921\u0940 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0905\u0928\u0941\u0926\u093e\u0928 \u092a\u0941\u0930\u0938\u094d\u0915\u093e\u0930 \u0915\u0940 \u0918\u094b\u0937\u0923\u093e \u091c\u0932\u094d\u0926 \u0939\u0940 \u0915\u0940 \u091c\u093e\u090f\u0917\u0940!<\/li>\n<li><strong>\u0936\u093f\u0915\u094d\u0937\u093e \u2013 <\/strong>\u091a\u093f\u0915\u093f\u0924\u094d\u0938\u0915 \u0936\u093f\u0915\u094d\u0937\u093e \u0905\u0902\u0924\u0930\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0938\u092e\u094d\u092e\u0947\u0932\u0928\u094b\u0902, \u0911\u0928\u0932\u093e\u0907\u0928 \u0935\u0947\u092c\u093f\u0928\u093e\u0930\u094b\u0902, \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u0935\u093f\u0936\u0947\u0937\u091c\u094d\u091e\u0924\u093e \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0914\u0930 \u0905\u0928\u094d\u092f \u092e\u093e\u0927\u094d\u092f\u092e\u094b\u0902 \u0938\u0947 \u0915\u0940 \u091c\u093e\u0924\u0940 \u0939\u0948\u0964.<\/li>\n<li><strong>\u0938\u092e\u0930\u094d\u0925\u0928 \u2013 <\/strong>\u0930\u094b\u0917\u093f\u092f\u094b\u0902 \u0914\u0930 \u0909\u0928\u0915\u0947 \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0938\u094d\u0935\u092f\u0902 \u0915\u0947 \u0932\u093f\u090f \u0935\u0915\u093e\u0932\u0924 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0906\u0935\u0936\u094d\u092f\u0915 \u0909\u092a\u0915\u0930\u0923 \u0914\u0930 \u0938\u0902\u092a\u0930\u094d\u0915 \u092a\u094d\u0930\u0926\u093e\u0928 \u0915\u0930\u0928\u093e \u0905\u092e\u0942\u0932\u094d\u092f \u0939\u0948\u0964  \u0906\u092a\u0915\u0947 \u0926\u093e\u0928 \u0915\u0947\u0935\u0932 \u0939\u092e\u093e\u0930\u0940 \u0926\u0941\u0930\u094d\u0932\u092d \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u094b \u092b\u0932\u0928\u0947-\u092b\u0942\u0932\u0928\u0947 \u092e\u0947\u0902 \u092e\u0926\u0926 \u0928\u0939\u0940\u0902 \u0915\u0930\u0924\u0947; \u0906\u092a\u0915\u0947 \u0909\u092a\u0939\u093e\u0930 \u0935\u0948\u091c\u094d\u091e\u093e\u0928\u093f\u0915 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0915\u0947 \u0932\u093f\u090f \u092d\u0940 \u0927\u0928 \u092a\u094d\u0930\u0926\u093e\u0928 \u0915\u0930\u0924\u0947 \u0939\u0948\u0902, \u091c\u094b \u0915\u0948\u0902\u0938\u0930 \u0938\u0947 \u0938\u0902\u092c\u0902\u0927\u093f\u0924 \u0928\u093f\u0937\u094d\u0915\u0930\u094d\u0937\u094b\u0902 \u0915\u094b \u0906\u0917\u0947 \u092c\u0922\u093c\u093e\u0924\u0947 \u0939\u0948\u0902\u0964.<\/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\">\u0928\u094b\u0906 \u091b\u0941\u091f\u094d\u091f\u093f\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u0924\u0948\u092f\u093e\u0930 \u0939\u0948! \u0928\u094d\u092f\u0942\u091c\u093c\u0932\u0947\u091f\u0930 \u092e\u0947\u0902 \u0909\u0938\u0915\u0940 ECD \u0915\u0939\u093e\u0928\u0940 \u092a\u0922\u093c\u0947\u0902\u0964.<\/p><\/div>\n<h2>2022 \u092e\u0947\u0902 \u091c\u0941\u0921\u093c\u0947\u0902<\/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=\"\u0935\u093e\u0930\u094d\u0937\u093f\u0915 \u0930\u094b\u0917\u0940 \u092c\u0948\u0920\u0915\" href=\"https:\/\/www.erdheim-chester.org\/hi\/%e0%a4%88%e0%a4%b8%e0%a5%80%e0%a4%a1%e0%a5%80-%e0%a4%b0%e0%a5%8b%e0%a4%97%e0%a5%80-%e0%a4%aa%e0%a4%b0%e0%a4%bf%e0%a4%b5%e0%a4%be%e0%a4%b0-%e0%a4%b8%e0%a4%82%e0%a4%97%e0%a4%ae\/\">\u0907\u0938 \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e \u0915\u0947 \u092c\u093e\u0930\u0947 \u092e\u0947\u0902 \u0914\u0930 \u091c\u093e\u0928\u0915\u093e\u0930\u0940 \u092f\u0939\u093e\u0901 \u092a\u094d\u0930\u093e\u092a\u094d\u0924 \u0915\u0930\u0947\u0902\u0964.<\/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\">\u0939\u092e\u093e\u0930\u0947 \u0935\u0930\u094d\u0937-\u0905\u0902\u0924 \u0928\u094d\u092f\u0942\u091c\u093c\u0932\u0947\u091f\u0930 \u092e\u0947\u0902 \u0914\u0930 \u0905\u092a\u0921\u0947\u091f\u094d\u0938 \u0915\u0947 \u092c\u093e\u0930\u0947 \u092e\u0947\u0902 \u092a\u0922\u093c\u0947\u0902!<\/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\/hi\/wp-json\/wp\/v2\/posts\/20009","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/comments?post=20009"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/20009\/revisions"}],"predecessor-version":[{"id":175268,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/20009\/revisions\/175268"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/20008"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=20009"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/categories?post=20009"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/tags?post=20009"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}