{"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":"2021-%e0%a4%a6%e0%a5%81%e0%a4%b0%e0%a5%8d%e0%a4%b2%e0%a4%ad-%e0%a4%b0%e0%a5%8b%e0%a4%97-%e0%a4%a6%e0%a4%bf%e0%a4%b5%e0%a4%b8-2","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/hi\/2021-rare-disease-day\/","title":{"rendered":"2021 \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938"},"content":{"rendered":"<h1><strong>\u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938 \u0915\u094d\u092f\u093e \u0939\u0948?<\/strong><\/h1>\n<p><em>28 \u092b\u0930\u0935\u0930\u0940, 2021<\/em>, \u092f\u0939 EURORDIS \u0926\u094d\u0935\u093e\u0930\u093e \u0938\u092e\u0928\u094d\u0935\u093f\u0924 14\u0935\u093e\u0902 \u0905\u0902\u0924\u0930\u094d\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938 \u0939\u094b\u0917\u093e\u0964 \u0907\u0938 \u0926\u093f\u0928 \u0914\u0930 \u0907\u0938\u0915\u0947 \u0906\u0938\u092a\u093e\u0938, \u0926\u0941\u0928\u093f\u092f\u093e \u092d\u0930 \u0915\u0947 \u0926\u0947\u0936\u094b\u0902 \u0914\u0930 \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u094b\u0902 \u0915\u0940 \u0938\u0948\u0915\u0921\u093c\u094b\u0902 \u0930\u094b\u0917\u0940 \u0938\u0902\u0917\u0920\u0928 \u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092c\u0922\u093c\u093e\u0928\u0947 \u0935\u093e\u0932\u0940 \u0917\u0924\u093f\u0935\u093f\u0927\u093f\u092f\u093e\u0901 \u0906\u092f\u094b\u091c\u093f\u0924 \u0915\u0930\u0947\u0902\u0917\u0947\u0964.<\/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>ECD \u0915\u0947 \u0938\u093e\u0925 \u0905\u092a\u0928\u0947 \u0905\u0928\u0941\u092d\u0935 \u0915\u094b \u0938\u093e\u091d\u093e \u0915\u0930\u0915\u0947 \u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u0947 \u092a\u094d\u0930\u0924\u093f \u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092b\u0948\u0932\u093e\u0928\u0947 \u092e\u0947\u0902 ECD \u0917\u094d\u0932\u094b\u092c\u0932 \u0905\u0932\u093e\u092f\u0902\u0938 \u092e\u0947\u0902 \u0936\u093e\u092e\u093f\u0932 \u0939\u094b\u0902\u0964.<\/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\">\u0906\u0927\u093f\u0915\u093e\u0930\u093f\u0915 \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938 \u0935\u0940\u0921\u093f\u092f\u094b\u00a0<\/a><\/p>\n<p>Find more resources and ways to raise awareness on our <a title=\"\u0936\u092c\u094d\u0926 \u092b\u0948\u0932\u093e\u0913\" href=\"https:\/\/www.erdheim-chester.org\/hi\/%e0%a4%87%e0%a4%b8%e0%a5%87-%e0%a4%ab%e0%a5%88%e0%a4%b2%e0%a4%be-%e0%a4%a6%e0%a5%8b\/\">\u0936\u092c\u094d\u0926 \u092b\u0948\u0932\u093e\u0913<\/a> \u0935\u0947\u092c\u092a\u0947\u091c \u092f\u093e \u092a\u0930 <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">\u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938 \u0935\u0947\u092c\u0938\u093e\u0907\u091f<\/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>\u0907\u0938 \u0935\u0930\u094d\u0937 \u0915\u0947 \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938 \u0915\u0947 \u0932\u093f\u090f \u091c\u093e\u0930\u0940 \u0915\u0940 \u0917\u0908 \u0939\u092e\u093e\u0930\u0940 \u0928\u0935\u0940\u0928\u0924\u092e \u0930\u094b\u0917\u0940 \u0915\u0939\u093e\u0928\u0940 \u092a\u0922\u093c\u0947\u0902: <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/A-Spiritual-Journey-Through-ECD-Dean-William.pdf\">\u0908\u0938\u0940\u0921\u0940 \u0915\u0947 \u092e\u093e\u0927\u094d\u092f\u092e \u0938\u0947 \u090f\u0915 \u0906\u0927\u094d\u092f\u093e\u0924\u094d\u092e\u093f\u0915 \u092f\u093e\u0924\u094d\u0930\u093e<\/a><\/strong><\/p>\n<p><strong>\u0907\u0938 \u092b\u094d\u0932\u093e\u092f\u0930 \u0915\u094b \u0905\u092a\u0928\u0947 \u092e\u0940\u0921\u093f\u092f\u093e \u092a\u0947\u091c\u094b\u0902 \u092a\u0930 \u092f\u093e \u0908\u092e\u0947\u0932 \u0915\u0947 \u092e\u093e\u0927\u094d\u092f\u092e \u0938\u0947 \u0938\u093e\u091d\u093e \u0915\u0930\u0947\u0902\u0964 <\/strong><strong>\u0906\u092a\u0915\u0947 \u0938\u0902\u092a\u0930\u094d\u0915\u094b\u0902 \u0915\u0947 \u0938\u093e\u0925!<\/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>\u0907\u0938 \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0926\u093f\u0935\u0938 \u092a\u0930 \u0906\u092a \u091c\u094b \u0915\u0941\u091b \u092d\u0940 \u0915\u0930\u0947\u0902, \u0906\u092a\u0915\u093e \u0935\u0915\u093e\u0932\u0924 \u0938\u092e\u0942\u0939 \u0907\u0938 \u092f\u093e\u0924\u094d\u0930\u093e \u092e\u0947\u0902 \u0906\u092a\u0915\u093e \u0938\u092e\u0930\u094d\u0925\u0928 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u092f\u0939\u093e\u0901 \u0939\u0948! \u0905\u092a\u0928\u0947 \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u093f\u092c\u0928 \u0915\u094b \u0917\u0930\u094d\u0935 \u0915\u0947 \u0938\u093e\u0925 \u0927\u093e\u0930\u0923 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0927\u0928\u094d\u092f\u0935\u093e\u0926!<\/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\/hi\/wp-json\/wp\/v2\/posts\/19549","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=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}