{"id":46398,"date":"2025-03-21T10:26:50","date_gmt":"2025-03-21T14:26:50","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=46398"},"modified":"2026-08-19T05:44:28","modified_gmt":"2026-08-19T10:44:28","slug":"%d7%99%d7%95%d7%9d-%d7%94%d7%9e%d7%97%d7%9c%d7%95%d7%aa-%d7%94%d7%a0%d7%93%d7%99%d7%a8%d7%95%d7%aa-2025-%d7%94%d7%96%d7%93%d7%9e%d7%a0%d7%95%d7%aa-%d7%9c%d7%94%d7%a4%d7%a0%d7%95%d7%aa-%d7%96","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/rare-disease-day-2025-a-chance-to-shine-a-light-on-erdheim-chester-disease-2\/","title":{"rendered":"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea 2025: \u05d4\u05d6\u05d3\u05de\u05e0\u05d5\u05ea \u05dc\u05d4\u05e4\u05e0\u05d5\u05ea \u05d6\u05e8\u05e7\u05d5\u05e8 \u05dc\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8"},"content":{"rendered":"

\u05de\u05d3\u05d9 \u05e9\u05e0\u05d4, \u05d1\u05d9\u05d5\u05dd \u05d4\u05d0\u05d7\u05e8\u05d5\u05df \u05e9\u05dc \u05d7\u05d5\u05d3\u05e9 \u05e4\u05d1\u05e8\u05d5\u05d0\u05e8, \u05d4\u05e7\u05d4\u05d9\u05dc\u05d4 \u05d4\u05e2\u05d5\u05dc\u05de\u05d9\u05ea \u05de\u05ea\u05d0\u05d2\u05d3\u05ea \u05db\u05d3\u05d9 \u05dc\u05e6\u05d9\u05d9\u05df\u00a0\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea<\/strong>\u2014\u05d9\u05d5\u05d6\u05de\u05d4 \u05d7\u05d9\u05d5\u05e0\u05d9\u05ea \u05d4\u05de\u05d3\u05d2\u05d9\u05e9\u05d4 \u05d0\u05ea \u05d4\u05d0\u05ea\u05d2\u05e8\u05d9\u05dd \u05d4\u05e2\u05d5\u05de\u05d3\u05d9\u05dd \u05d1\u05e4\u05e0\u05d9 \u05d0\u05e0\u05e9\u05d9\u05dd \u05d4\u05d7\u05d9\u05d9\u05dd \u05e2\u05dd \u05de\u05d7\u05dc\u05d5\u05ea \u05e0\u05d3\u05d9\u05e8\u05d5\u05ea. \u05d1-\u00a028 \u05d1\u05e4\u05d1\u05e8\u05d5\u05d0\u05e8 2025<\/strong>, \u05d4\u05d1\u05e8\u05d9\u05ea \u05d4\u05e2\u05d5\u05dc\u05de\u05d9\u05ea \u05dc\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8 (ECDGA) \u05d2\u05d0\u05d4 \u05dc\u05d4\u05e6\u05d8\u05e8\u05e3 \u05dc\u05ea\u05e0\u05d5\u05e2\u05d4 \u05d4\u05e2\u05d5\u05dc\u05de\u05d9\u05ea \u05d4\u05d6\u05d5 \u05e9\u05de\u05d8\u05e8\u05ea\u05d4 \u05d4\u05e2\u05dc\u05d0\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea \u05d1\u05e0\u05d5\u05e9\u05d0\u00a0\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8 (ECD)<\/strong>\u00a0and the urgent need for greater research, diagnosis, and treatment advancements.<\/p>\n

ECD \u05d4\u05d9\u05d0\u00a0\u05e1\u05e8\u05d8\u05df \u05d3\u05dd \u05e0\u05d3\u05d9\u05e8 \u05d1\u05d9\u05d5\u05ea\u05e8<\/strong>\u00a0\u05d4\u05de\u05e9\u05e4\u05d9\u05e2\u05d4 \u05e2\u05dc \u05d0\u05d9\u05d1\u05e8\u05d9\u05dd \u05e8\u05d1\u05d9\u05dd, \u05d1\u05d4\u05dd \u05d4\u05e2\u05e6\u05de\u05d5\u05ea, \u05d4\u05dc\u05d1, \u05d4\u05de\u05d5\u05d7 \u05d5\u05d4\u05db\u05dc\u05d9\u05d5\u05ea. \u05d1\u05e9\u05dc \u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\u05d4, \u05d7\u05d5\u05dc\u05d9\u05dd \u05e8\u05d1\u05d9\u05dd \u05e1\u05d5\u05d1\u05dc\u05d9\u05dd\u00a0\u05e9\u05e0\u05d9\u05dd \u05e9\u05dc \u05d0\u05d1\u05d7\u05d5\u05df \u05e9\u05d2\u05d5\u05d9<\/strong>\u00a0\u05dc\u05e4\u05e0\u05d9 \u05e9\u05e7\u05d9\u05d1\u05dc\u05d5 \u05d0\u05d1\u05d7\u05d5\u05df \u05d5\u05d8\u05d9\u05e4\u05d5\u05dc \u05e0\u05db\u05d5\u05e0\u05d9\u05dd. \u05d4\u05e9\u05e0\u05d4, \"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\" \u05de\u05d4\u05d5\u05d5\u05d4 \u05d4\u05d6\u05d3\u05de\u05e0\u05d5\u05ea \u05dc\u05e7\u05d4\u05d9\u05dc\u05ea \u05d4-ECD \u05dc\u05d4\u05ea\u05d0\u05d7\u05d3, \u05dc\u05d7\u05dc\u05d5\u05e7 \u05d0\u05ea \u05e1\u05d9\u05e4\u05d5\u05e8\u05d9\u05d4\u05dd \u05d5\u05dc\u05e4\u05e2\u05d5\u05dc \u05dc\u05de\u05e2\u05df \u05e9\u05d9\u05e0\u05d5\u05d9.<\/p>\n

\u05d0\u05d9\u05da \u05ea\u05d5\u05db\u05dc\u05d5 \u05dc\u05e2\u05d6\u05d5\u05e8 \u05d1\u05d4\u05d2\u05d1\u05e8\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea?<\/h3>\n
    \n
  1. \u05e9\u05ea\u05e4\u05d5 \u05d0\u05ea \u05d4\u05e1\u05d9\u05e4\u05d5\u05e8 \u05e9\u05dc\u05db\u05dd<\/strong>\u00a0\u2013 Personal experiences are powerful. By sharing stories of those affected by ECD, we can help others understand the challenges of living with a rare disease and encourage early diagnosis.<\/li>\n
  2. \u05dc\u05d4\u05d9\u05d5\u05ea \u05e4\u05e2\u05d9\u05dc\u05d9\u05dd \u05d1\u05e8\u05e9\u05ea\u05d5\u05ea \u05d4\u05d7\u05d1\u05e8\u05ea\u05d9\u05d5\u05ea<\/strong>\u00a0\u2013 Use Rare Disease Day 2025 as a platform to post about ECD, using official hashtags and tagging advocacy organizations to expand our reach.<\/li>\n
  3. \u05dc\u05d4\u05e2\u05e0\u05d9\u05e7 \u05d7\u05d9\u05e0\u05d5\u05da \u05d5\u05dc\u05d4\u05e4\u05d9\u05e5 \u05de\u05d9\u05d3\u05e2<\/strong>\u00a0\u2013 Encourage friends, family, and healthcare professionals to learn more about ECD by directing them to the ECDGA website and Rare Disease Day resources.<\/li>\n
  4. \u05ea\u05de\u05d9\u05db\u05d4 \u05d1\u05de\u05d7\u05e7\u05e8 \u05d5\u05d1\u05d2\u05d9\u05d5\u05e1 \u05ea\u05e8\u05d5\u05de\u05d5\u05ea<\/strong>\u00a0\u2013 Donations and research funding are critical for developing new treatments. Consider supporting ECDGA\u2019s initiatives to help advance medical understanding of ECD.<\/li>\n
  5. \u05dc\u05dc\u05d1\u05d5\u05e9 \u05e4\u05e1\u05d9\u05dd \u05e9\u05dc \u05d6\u05d1\u05e8\u05d4 \u05d0\u05d5 \u05e6\u05d1\u05e2\u05d9 \u05d8\u05d5\u05e8\u05e7\u05d9\u05d6 \u05d5\u05db\u05d7\u05d5\u05dc \u05db\u05d4\u05d4<\/strong>\u00a0\u2013 \u05d0\u05e8\u05d2\u05d5\u05e0\u05d9\u05dd \u05e8\u05d1\u05d9\u05dd \u05d4\u05e2\u05d5\u05e1\u05e7\u05d9\u05dd \u05d1\u05de\u05d7\u05dc\u05d5\u05ea \u05e0\u05d3\u05d9\u05e8\u05d5\u05ea \u05de\u05e9\u05ea\u05de\u05e9\u05d9\u05dd \u05d1\u05d6\u05d1\u05e8\u05d4 \u05db\u05e1\u05de\u05dc \u05dc\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea, \u05d1\u05e2\u05d5\u05d3 \u05e9\u05e6\u05d1\u05e2\u05d9 \u05d4-ECDGA \u2013 \u05d8\u05d5\u05e8\u05e7\u05d9\u05d6 \u05d5\u05db\u05d7\u05d5\u05dc \u05db\u05d4\u05d4 \u2013 \u05de\u05d9\u05d9\u05e6\u05d2\u05d9\u05dd \u05ea\u05e7\u05d5\u05d5\u05d4 \u05d5\u05d0\u05d7\u05d3\u05d5\u05ea \u05d1\u05ea\u05d5\u05da \u05d4\u05e7\u05d4\u05d9\u05dc\u05d4 \u05e9\u05dc\u05e0\u05d5.<\/li>\n<\/ol>\n

    \u05d4\u05d9\u05d5 \u05e7\u05d5\u05dc \u05e2\u05d1\u05d5\u05e8 \u05e7\u05d4\u05d9\u05dc\u05ea \u05d4-ECD<\/h3>\n

    \"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\" \u05d4\u05d5\u05d0 \u05d9\u05d5\u05ea\u05e8 \u05de\u05e1\u05ea\u05dd \u05ea\u05d0\u05e8\u05d9\u05da \u05d1\u05dc\u05d5\u05d7 \u05d4\u05e9\u05e0\u05d4 \u2014 \u05d6\u05d5 \u05d4\u05d6\u05d3\u05de\u05e0\u05d5\u05ea \u05dc\u05d4\u05e4\u05e0\u05d5\u05ea \u05d0\u05ea \u05ea\u05e9\u05d5\u05de\u05ea \u05d4\u05dc\u05d1 \u05d4\u05e2\u05d5\u05dc\u05de\u05d9\u05ea \u05dc\u05de\u05d7\u05dc\u05d5\u05ea \u05db\u05de\u05d5 ECD, \u05e9\u05dc\u05e2\u05ea\u05d9\u05dd \u05e7\u05e8\u05d5\u05d1\u05d5\u05ea \u05e0\u05e2\u05dc\u05de\u05d5\u05ea \u05de\u05e2\u05d9\u05e0\u05d9\u05e0\u05d5. \u05e2\u05dc \u05d9\u05d3\u05d9 \u05e0\u05e7\u05d9\u05d8\u05ea \u05e4\u05e2\u05d5\u05dc\u05d4, \u05e0\u05d5\u05db\u05dc \u05dc\u05e7\u05d3\u05dd \u05d4\u05d1\u05e0\u05d4, \u05dc\u05d4\u05e0\u05d9\u05e2 \u05de\u05d0\u05de\u05e6\u05d9 \u05de\u05d7\u05e7\u05e8 \u05d5\u05dc\u05d4\u05d1\u05d8\u05d9\u05d7 \u05e9\u05d0\u05e3 \u05d0\u05d7\u05d3 \u05dc\u05d0 \u05d9\u05ea\u05de\u05d5\u05d3\u05d3 \u05e2\u05dd ECD \u05dc\u05d1\u05d3\u05d5.<\/p>\n

    Join us on\u00a028 \u05d1\u05e4\u05d1\u05e8\u05d5\u05d0\u05e8 2025<\/strong>, \u05db\u05d3\u05d9 \u05dc\u05d4\u05d2\u05d1\u05d9\u05e8 \u05d0\u05ea \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea \u05dc\u05de\u05d7\u05dc\u05ea \u05d0\u05e8\u05d3\u05d4\u05d9\u05d9\u05dd-\u05e6'\u05e1\u05d8\u05e8. \u05d1\u05e7\u05e8\u05d5 \u05d1\u05d0\u05ea\u05e8\u00a0\u05d0\u05ea\u05e8 \u05d4\u05d0\u05d9\u05e0\u05d8\u05e8\u05e0\u05d8 \u05e9\u05dc ECDGA<\/a>\u00a0\u05d5-\u00a0\u05d4\u05d3\u05e3 \u05d4\u05e8\u05e9\u05de\u05d9 \u05e9\u05dc \"\u05d9\u05d5\u05dd \u05d4\u05de\u05d7\u05dc\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d5\u05ea\"<\/a>\u00a0\u05db\u05d3\u05d9 \u05dc\u05dc\u05de\u05d5\u05d3 \u05e2\u05d5\u05d3 \u05d5\u05dc\u05d4\u05e6\u05d8\u05e8\u05e3!<\/p>\n

    \"\"<\/a><\/p>","protected":false},"excerpt":{"rendered":"

    Every year, on the last day of February, the global community comes together to recognize\u00a0Rare Disease Day\u2014a vital initiative that highlights the challenges faced by individuals living with rare conditions. […]<\/p>\n","protected":false},"author":20,"featured_media":44723,"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-46398","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/46398","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=46398"}],"version-history":[{"count":1,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/46398\/revisions"}],"predecessor-version":[{"id":175251,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/46398\/revisions\/175251"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/44723"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=46398"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=46398"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=46398"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}