{"id":53459,"date":"2025-05-07T09:14:10","date_gmt":"2025-05-07T13:14:10","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=53459"},"modified":"2026-08-13T10:14:46","modified_gmt":"2026-08-13T15:14:46","slug":"%e0%a4%8f%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%ae","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/hi\/session-highlight-brain-and-eye-involvement-in-erdheim-chester-disease\/","title":{"rendered":"\u0938\u0924\u094d\u0930 \u0915\u0940 \u092e\u0941\u0916\u094d\u092f \u092c\u093e\u0924: \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u092e\u0947\u0902 \u092e\u0938\u094d\u0924\u093f\u0937\u094d\u0915 \u0914\u0930 \u0906\u0901\u0916\u094b\u0902 \u0915\u0940 \u092d\u093e\u0917\u0940\u0926\u093e\u0930\u0940"},"content":{"rendered":"<p><strong>\u0935\u0915\u094d\u0924\u093e: \u090f\u0932\u0940 \u0921\u093e\u092f\u092e\u0902\u0921, \u090f\u092e\u0921\u0940<\/strong><br \/>\n<strong>\u0938\u092e\u092f: \u0938\u0941\u092c\u0939 10:50 \u2013 11:05<br \/>\n\u0926\u093f\u0928\u093e\u0902\u0915: 26 \u092e\u0908, 2025 \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u092e\u093f\u0932\u0928<br \/>\n<\/strong><\/p>\n<p>Erdheim-Chester \u0930\u094b\u0917 (ECD) \u0938\u0947 \u092a\u0940\u0921\u093c\u093f\u0924 \u0915\u0908 \u0935\u094d\u092f\u0915\u094d\u0924\u093f\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f, \u092e\u0938\u094d\u0924\u093f\u0937\u094d\u0915 \u0914\u0930 \u0906\u0901\u0916\u094b\u0902 \u0915\u0940 \u0938\u0902\u0932\u093f\u092a\u094d\u0924\u0924\u093e \u0938\u092c\u0938\u0947 \u0915\u0920\u093f\u0928 \u0914\u0930 \u092d\u092f\u093e\u0935\u0939 \u091c\u091f\u093f\u0932\u0924\u093e\u0913\u0902 \u092e\u0947\u0902 \u0938\u0947 \u090f\u0915 \u0939\u094b \u0938\u0915\u0924\u0940 \u0939\u0948\u0964 \u0907\u0938\u0932\u093f\u090f \u092f\u0939 \u0938\u0924\u094d\u0930, \u091c\u093f\u0938\u0915\u093e \u0928\u0947\u0924\u0943\u0924\u094d\u0935 <strong>\u0921\u0949. \u090f\u0932\u0940 \u0921\u093e\u092f\u092e\u0902\u0921<\/strong>, is an essential part of the Patient and Family Gathering. Dr. Diamond is not only a leading neuro-oncologist at Memorial Sloan Kettering Cancer Center in New York, but he is also the Chair of the ECDGA\u00a0Medical Advisory Board\u00a0and a pioneer in clinical research focused on ECD.<\/p>\n<h3>\u092e\u0938\u094d\u0924\u093f\u0937\u094d\u0915 \u0914\u0930 \u0906\u0901\u0916\u094b\u0902 \u0915\u0940 \u0938\u0902\u0932\u093f\u092a\u094d\u0924\u0924\u093e \u092a\u0930 \u090f\u0915 \u0915\u0930\u0940\u092c\u0940 \u0928\u091c\u093c\u0930<\/h3>\n<p>ECD is known to affect multiple organs, and in up to half of all diagnosed individuals, it impacts the central nervous system. This can lead to symptoms such as difficulty with balance, vision problems, headaches, or changes in mental function. In some cases, eye involvement includes retro-orbital masses that cause pain or pressure behind the eyes. For many patients, these symptoms may appear gradually and are easily misattributed to other conditions\u2014contributing to delays in diagnosis.<\/p>\n<p>\u0921\u0949. \u0921\u093e\u092f\u092e\u0902\u0921 \u0915\u093e \u0938\u0924\u094d\u0930 \u092a\u094d\u0930\u0924\u093f\u092d\u093e\u0917\u093f\u092f\u094b\u0902 \u0915\u094b \u0938\u092e\u091d\u0928\u0947 \u092e\u0947\u0902 \u092e\u0926\u0926 \u0915\u0930\u0947\u0917\u093e:<\/p>\n<ul>\n<li>\u0935\u0930\u094d\u0924\u092e\u093e\u0928 \u0935\u093f\u091c\u094d\u091e\u093e\u0928 \u091c\u094b \u092a\u094d\u0930\u0915\u091f \u0915\u0930\u0924\u093e \u0939\u0948 <strong>\u0915\u0948\u0938\u0947 \u0914\u0930 \u0915\u094d\u092f\u094b\u0902<\/strong> \u0908\u0938\u0940\u0921\u0940 \u092e\u0947\u0902 \u092e\u0938\u094d\u0924\u093f\u0937\u094d\u0915 \u0914\u0930 \u0906\u0901\u0916\u0947\u0902 \u092a\u094d\u0930\u092d\u093e\u0935\u093f\u0924 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902\u0964.<\/li>\n<li>\u0915\u094c\u0928 \u0938\u093e <strong>\u0932\u0915\u094d\u0937\u0923<\/strong> \u0938\u092c\u0938\u0947 \u0906\u092e \u0939\u0948\u0902 \u0914\u0930 \u091c\u093f\u0928\u0915\u0947 \u0932\u093f\u090f \u0926\u0947\u0916\u092d\u093e\u0932 \u092a\u094d\u0930\u0926\u093e\u0924\u093e \u0915\u0947 \u0938\u093e\u0925 \u0938\u092e\u092f \u092a\u0930 \u092c\u093e\u0924\u091a\u0940\u0924 \u0915\u0930\u0928\u0940 \u091a\u093e\u0939\u093f\u090f\u0964.<\/li>\n<li>\u0915\u0948\u0938\u0947 <strong>\u0907\u092e\u0947\u091c\u093f\u0902\u0917 \u0905\u0927\u094d\u092f\u092f\u0928<\/strong> \u0924\u0902\u0924\u094d\u0930\u093f\u0915\u093e \u0938\u0902\u092c\u0902\u0927\u0940 \u0914\u0930 \u0928\u0947\u0924\u094d\u0930 \u0938\u0902\u092c\u0902\u0927\u0940 \u0938\u0902\u0932\u093f\u092a\u094d\u0924\u0924\u093e \u0915\u0940 \u0928\u093f\u0917\u0930\u093e\u0928\u0940 \u0915\u0947 \u0932\u093f\u090f \u0909\u092a\u092f\u094b\u0917 \u0915\u093f\u090f \u091c\u093e\u0924\u0947 \u0939\u0948\u0902\u0964.<\/li>\n<li>\u0915\u0947 \u092c\u093e\u0930\u0947 \u092e\u0947\u0902 \u0915\u094d\u092f\u093e \u091c\u094d\u091e\u093e\u0924 \u0939\u0948 <strong>\u0926\u0940\u0930\u094d\u0918\u0915\u093e\u0932\u093f\u0915 \u092a\u0930\u093f\u0923\u093e\u092e<\/strong>, and how treatments may improve or stabilize symptoms.<\/li>\n<\/ul>\n<p>\u092f\u0939 \u0935\u093e\u0930\u094d\u0924\u093e \u092a\u094d\u0930\u0924\u093f\u092d\u093e\u0917\u093f\u092f\u094b\u0902 \u0915\u094b \u0921\u0949. \u0921\u093e\u092f\u092e\u0902\u0921 \u0926\u094d\u0935\u093e\u0930\u093e \u0938\u0902\u091a\u093e\u0932\u093f\u0924 \u0915\u0908 \u091a\u0932 \u0930\u0939\u0947 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0905\u0927\u094d\u092f\u092f\u0928\u094b\u0902 \u0938\u0947 \u092d\u0940 \u092a\u0930\u093f\u091a\u093f\u0924 \u0915\u0930\u093e\u090f\u0917\u0940, \u091c\u093f\u0928\u092e\u0947\u0902 \u0915\u0940 \u091c\u093e \u0930\u0939\u0940 \u091c\u093e\u0902\u091a\u094b\u0902 \u0938\u0939\u093f\u0924 <strong>\u0932\u0915\u094d\u0937\u093f\u0924 \u0909\u092a\u091a\u093e\u0930\u094b\u0902 \u0915\u0947 \u0928\u094d\u092f\u0942\u0930\u094b\u0932\u0949\u091c\u093f\u0915\u0932 \u092a\u094d\u0930\u092d\u093e\u0935<\/strong>, \u0914\u0930 <strong>\u092c\u093e\u092f\u094b\u092a\u094d\u0938\u0940 \u0924\u0915\u0928\u0940\u0915\u094b\u0902 \u092e\u0947\u0902 \u0938\u0941\u0927\u093e\u0930<\/strong> that aim to make diagnosis safer and more accurate for patients with brain or orbital lesions.<\/p>\n<h3>\u0921\u0949. \u0921\u093e\u092f\u092e\u0902\u0921 \u0915\u093e \u0915\u093e\u092e \u0915\u094d\u092f\u094b\u0902 \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u0939\u0948<\/h3>\n<p>Dr. Diamond has been at the forefront of many of the most meaningful advancements in ECD research over the past decade. He has led clinical trials for medications like vemurafenib and cobimetinib which have led to FDA approval of these treatments for ECD patients. \u00a0He has published extensively on ECD-related neurologic symptoms, and co-founded the ECD Patient Registry, a tool that allows patients to contribute to global research from their own homes.<\/p>\n<p>He brings a unique combination of clinical experience, research knowledge, and compassion to his work. He understands that symptoms affecting the brain and eyes are not only physically challenging but emotionally overwhelming. Through his leadership, patients are receiving earlier diagnoses, more effective care, and greater hope.<\/p>\n<h3>\u0907\u0938 \u0938\u0924\u094d\u0930 \u0938\u0947 \u0915\u094d\u092f\u093e \u0909\u092e\u094d\u092e\u0940\u0926 \u0915\u0930\u0947\u0902<\/h3>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/08\/PFG-Program-2025-05-06-English-DRAFT.pdf\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"border-image alignleft wp-image-174685\" title=\"\u0938\u0940\u092e\u093e-\u091b\u0935\u093f\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/PFG-Program-Cover-English-scaled-1.jpg\" alt=\"\" width=\"216\" height=\"306\" \/><\/a>This will be a focused, accessible presentation intended for patients and caregivers who may be navigating neurological symptoms, living with vision changes, or simply looking to understand more about this aspect of ECD. While no personal medical advice will be given, Dr. Diamond\u2019s insights may help attendees ask better questions of their own physicians and feel more informed about the complexities of this disease.<\/p>\n<p>\u091a\u093e\u0939\u0947 \u0906\u092a \u092e\u0930\u0940\u091c \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902, \u092a\u0930\u093f\u0935\u093e\u0930 \u0915\u0947 \u0938\u0926\u0938\u094d\u092f \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902, \u092f\u093e \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u092a\u0947\u0936\u0947\u0935\u0930 \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902 \u0909\u092a\u0938\u094d\u0925\u093f\u0924 \u0939\u094b\u0902, \u092f\u0939 \u0938\u0924\u094d\u0930 \u090f\u0930\u094d\u0921\u0939\u093e\u0907\u092e-\u091a\u0947\u0938\u094d\u091f\u0930 \u0930\u094b\u0917 \u092e\u0947\u0902 \u0924\u0902\u0924\u094d\u0930\u093f\u0915\u093e \u0938\u0902\u092c\u0902\u0927\u0940 \u0938\u0902\u0932\u093f\u092a\u094d\u0924\u0924\u093e \u092a\u0930 \u0926\u0941\u0928\u093f\u092f\u093e \u0915\u0947 \u092a\u094d\u0930\u092e\u0941\u0916 \u0935\u093f\u0936\u0947\u0937\u091c\u094d\u091e\u094b\u0902 \u092e\u0947\u0902 \u0938\u0947 \u090f\u0915 \u0938\u0947 \u0938\u0940\u0927\u0947 \u0938\u0940\u0916\u0928\u0947 \u0915\u093e \u0905\u0935\u0938\u0930 \u0939\u0948\u0964.<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/08\/PFG-Program-2025-05-06-English-DRAFT.pdf\" target=\"_blank\" rel=\"noopener\">\u090f\u091c\u0947\u0902\u0921\u093e \u0921\u093e\u0909\u0928\u0932\u094b\u0921 \u0915\u0930\u0947\u0902<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Speaker: Eli Diamond, MD Time: 10:50 AM \u2013 11:05 AM Date: May 26, 2025 Patient &amp; Family Gathering For many individuals living with Erdheim-Chester Disease (ECD), the involvement of the [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":174683,"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":[594,375,378,387,380,383,374,384,386,376,385],"class_list":["post-53459","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-barcelona","tag-ecdawareness","tag-ecdcommunity","tag-ecdga","tag-ecdsupport","tag-ecdvolunteer","tag-erdheimchesterdisease","tag-hopeforecd","tag-makerarevisible","tag-raredisease","tag-supportraredisease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/53459","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=53459"}],"version-history":[{"count":3,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/53459\/revisions"}],"predecessor-version":[{"id":174688,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/53459\/revisions\/174688"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/174683"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=53459"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/categories?post=53459"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/tags?post=53459"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}