{"id":104190,"date":"2025-09-23T19:06:51","date_gmt":"2025-09-24T00:06:51","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=104190"},"modified":"2025-11-03T12:23:19","modified_gmt":"2025-11-03T18:23:19","slug":"%e0%a4%85%e0%a4%b0%e0%a5%8d%e0%a4%a1%e0%a4%b9%e0%a4%be%e0%a4%87%e0%a4%ae-%e0%a4%9a%e0%a5%87%e0%a4%b8%e0%a5%8d%e0%a4%9f%e0%a4%b0-%e0%a4%b0%e0%a5%8b%e0%a4%97-%e0%a4%ae%e0%a5%87%e0%a4%82-%e0%a4%b0","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/hi\/survivorship-in-erdheim-chester-disease-incorporating-the-patient-voice\/","title":{"rendered":"\u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u092e\u0947\u0902 \u0909\u0924\u094d\u0924\u0930\u091c\u0940\u0935\u093f\u0924\u093e: \u0930\u094b\u0917\u0940 \u0915\u0940 \u0906\u0935\u093e\u091c\u093c \u0915\u094b \u0936\u093e\u092e\u093f\u0932 \u0915\u0930\u0928\u093e"},"content":{"rendered":"<p><iframe loading=\"lazy\" title=\"\u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u092e\u0947\u0902 \u0909\u0924\u094d\u0924\u0930\u091c\u0940\u0935\u093f\u0924\u093e: \u0930\u094b\u0917\u0940 \u0915\u0940 \u0906\u0935\u093e\u091c\u093c \u0915\u094b \u0936\u093e\u092e\u093f\u0932 \u0915\u0930\u0928\u093e\" width=\"1080\" height=\"608\" src=\"https:\/\/www.youtube.com\/embed\/3ZZMoTX1500?feature=oembed\"  allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>\u0921\u0949. \u0917\u094c\u0930\u0935 \u0917\u094b\u092f\u0932, \u092f\u0942\u0928\u093f\u0935\u0930\u094d\u0938\u093f\u091f\u0940 \u0911\u092b \u0905\u0932\u092c\u093e\u092e\u093e \u090f\u091f \u092c\u0930\u094d\u092e\u093f\u0902\u0918\u092e \u0926\u094d\u0935\u093e\u0930\u093e, \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0921\u093f\u091c\u0940\u091c \u0917\u094d\u0932\u094b\u092c\u0932 \u0905\u0932\u093e\u092f\u0902\u0938 (ECDGA) \u0915\u0947 \u0938\u0939\u092f\u094b\u0917 \u0938\u0947 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u0964 \u092f\u0939 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0921\u093f\u091c\u0940\u091c (ECD) \u092e\u0947\u0902 \u0938\u0930\u094d\u0935\u093e\u0907\u0935\u0949\u0930\u0936\u093f\u092a \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0915\u0947 \u092e\u0939\u0924\u094d\u0935 \u0914\u0930 \u0909\u0938 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0915\u094b \u0906\u0915\u093e\u0930 \u0926\u0947\u0928\u0947 \u092e\u0947\u0902 \u0930\u094b\u0917\u093f\u092f\u094b\u0902 \u0915\u0940 \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u092d\u0942\u092e\u093f\u0915\u093e 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\u091c\u0948\u0938\u0947 \u0926\u0940\u0930\u094d\u0918\u0915\u093e\u0932\u093f\u0915 \u092a\u0930\u093f\u0923\u093e\u092e\u094b\u0902 \u092a\u0930 \u0915\u0947\u0902\u0926\u094d\u0930\u093f\u0924 \u0939\u0948, \u091c\u093f\u0928\u094d\u0939\u0947\u0902 \u092a\u093e\u0930\u0902\u092a\u0930\u093f\u0915 \u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u0921\u0947\u091f\u093e \u092e\u0947\u0902 \u0905\u0915\u094d\u0938\u0930 \u0905\u0928\u0926\u0947\u0916\u093e \u0915\u093f\u092f\u093e \u091c\u093e\u0924\u093e \u0939\u0948\u0964.<\/p>\n<p>\u0921\u0949. \u0917\u094b\u092f\u0932 \u092c\u0924\u093e\u0924\u0947 \u0939\u0948\u0902 \u0915\u093f ECD \u091c\u0948\u0938\u0940 \u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u0907\u0938 \u092a\u094d\u0930\u0915\u093e\u0930 \u0915\u093e \u0936\u094b\u0927 \u0915\u094d\u092f\u094b\u0902 \u0906\u0935\u0936\u094d\u092f\u0915 \u0939\u0948, \u091c\u0939\u093e\u0901 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\u091c\u0940\u0935\u0928 \u0915\u0940 \u092c\u0947\u0939\u0924\u0930 \u0917\u0941\u0923\u0935\u0924\u094d\u0924\u093e \u0915\u0947 \u0938\u093e\u0925 \u0938\u093e\u0925-\u0938\u093e\u0925 \u091a\u0932\u0947\u0964.<\/p>","protected":false},"excerpt":{"rendered":"<p>\u0921\u0949. \u0917\u094c\u0930\u0935 \u0917\u094b\u092f\u0932, \u092f\u0942\u0928\u093f\u0935\u0930\u094d\u0938\u093f\u091f\u0940 \u0911\u092b \u0905\u0932\u092c\u093e\u092e\u093e \u090f\u091f \u092c\u0930\u094d\u092e\u093f\u0902\u0918\u092e \u0926\u094d\u0935\u093e\u0930\u093e \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924   \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0921\u093f\u091c\u0940\u091c \u0917\u094d\u0932\u094b\u092c\u0932 \u0905\u0932\u093e\u092f\u0902\u0938 (ECDGA) \u0915\u0947 \u0938\u0939\u092f\u094b\u0917 \u0938\u0947   \u092f\u0939 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0921\u093f\u091c\u0940\u091c (ECD) \u092e\u0947\u0902 \u0938\u0930\u094d\u0935\u093e\u0907\u0935\u0949\u0930\u0936\u093f\u092a \u0930\u093f\u0938\u0930\u094d\u091a \u0915\u0947 \u092e\u0939\u0924\u094d\u0935 \u0914\u0930 \u0909\u0938 \u0936\u094b\u0927 \u0915\u094b \u0906\u0915\u093e\u0930 \u0926\u0947\u0928\u0947 \u092e\u0947\u0902 \u0930\u094b\u0917\u093f\u092f\u094b\u0902 \u0915\u0940 \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u092d\u0942\u092e\u093f\u0915\u093e \u0915\u093e \u0905\u0928\u094d\u0935\u0947\u0937\u0923 \u0915\u0930\u0924\u0940 \u0939\u0948\u0964.<\/p>","protected":false},"author":20,"featured_media":104191,"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":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[351],"tags":[375,387,374,4871,3292,3733,2601,4883],"class_list":["post-104190","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-webinar-recordings","tag-ecdawareness","tag-ecdga","tag-erdheimchesterdisease","tag-globalhistiocytosis","tag-patientadvocacy","tag-rarebutpowerful","tag-rarediseaseadvocacy","tag-survivorship"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/104190","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/comments?post=104190"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/104190\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/104191"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=104190"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/categories?post=104190"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/tags?post=104190"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}