{"id":175314,"date":"2026-09-01T00:00:32","date_gmt":"2026-09-01T05:00:32","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=175314"},"modified":"2026-09-01T10:08:55","modified_gmt":"2026-09-01T15:08:55","slug":"ecd-awareness-month-begins-understanding-erdheim-chester-disease","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/hi\/ecd-awareness-month-begins-understanding-erdheim-chester-disease\/","title":{"rendered":"\u0908\u0938\u0940\u0921\u0940 \u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092e\u093e\u0939 \u0936\u0941\u0930\u0942: \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u0915\u094b \u0938\u092e\u091d\u0928\u093e"},"content":{"rendered":"<p>ECDGA Community,<\/p>\n<p>This week marks the beginning of <strong>\u0908\u0938\u0940\u0921\u0940 \u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092e\u093e\u0939<\/strong>, and we\u2019re starting with one of the most important steps we can take together: helping more people understand Erdheim-Chester Disease.<\/p>\n<p><strong>You can\u2019t recognize what you\u2019ve never heard of.<\/strong><\/p>\n<p>For many people living with ECD, the journey to diagnosis begins long before they ever hear the words <em>\u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917<\/em>. Symptoms can affect different parts of the body, experiences vary from person to person, and the rarity of ECD can make finding answers challenging.<\/p>\n<p>Throughout this first week, we\u2019ll focus on building a foundation of understanding. We\u2019ll explore:<\/p>\n<ul>\n<li><strong>\u0908\u0938\u0940\u0921\u0940 \u0915\u094d\u092f\u093e \u0939\u0948?<\/strong><\/li>\n<li><strong>What signs and symptoms can occur?<\/strong><\/li>\n<li><strong>Why can the diagnostic journey be so difficult?<\/strong><\/li>\n<li><strong>How rare is ECD?<\/strong><\/li>\n<li><strong>What are some common myths about the disease?<\/strong><\/li>\n<li><strong>And our mascot, \u00a0Ziggy<\/strong>, will help us make complicated information a little easier to understand and share.<\/li>\n<\/ul>\n<p>Whether you are a patient, caregiver, family member, physician, researcher, volunteer, donor, or friend of the ECD community, <strong>you have a role in raising awareness.<\/strong><\/p>\n<p>This week, we ask you to do something simple: <strong>follow along, learn something new, and share our posts with others.<\/strong> Every person who learns about ECD is one more person who can help make this rare disease more visible.<\/p>\n<p>Together, we can turn <strong>knowledge into recognition, recognition into connection, and connection into hope.<\/strong><\/p>\n<p><strong>\u0906\u091c \u0915\u093e \u091c\u094d\u091e\u093e\u0928\u0964 \u0915\u0932 \u0915\u0940 \u0906\u0936\u093e\u0964.<\/strong><\/p>\n<p>\u0915\u0943\u0924\u091c\u094d\u091e\u0924\u093e \u0938\u0939\u093f\u0924,<br \/>\n<strong>\u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0917\u0920\u092c\u0902\u0927\u0928<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>ECDGA Community, This week marks the beginning of ECD Awareness Month, and we\u2019re starting with one of the most important steps we can take together: helping more people understand Erdheim-Chester [&hellip;]<\/p>\n","protected":false},"author":27,"featured_media":176018,"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":[51],"tags":[],"class_list":["post-175314","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/175314","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\/27"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/comments?post=175314"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/175314\/revisions"}],"predecessor-version":[{"id":176020,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/175314\/revisions\/176020"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/176018"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=175314"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/categories?post=175314"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/tags?post=175314"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}