{"id":2926,"date":"2026-04-16T21:18:18","date_gmt":"2026-04-16T18:18:18","guid":{"rendered":"https:\/\/dmdwarrior.com\/?p=2926"},"modified":"2026-04-16T21:21:56","modified_gmt":"2026-04-16T18:21:56","slug":"duchenne-muscular-dystrophy-treatment-access","status":"publish","type":"post","link":"https:\/\/dmdwarrior.com\/hi\/duchenne-muscular-dystrophy-treatment-access\/","title":{"rendered":"\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a: \u0938\u092e\u093e\u0928\u0924\u093e, \u0928\u0940\u0924\u093f \u0914\u0930 \u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u0940 \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0935\u093f\u092b\u0932\u0924\u093e"},"content":{"rendered":"<p class=\"wp-block-paragraph\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 (\u0921\u0940\u090f\u092e\u0921\u0940) \u0905\u092c \u0915\u0947\u0935\u0932 \u0907\u0938\u0915\u0940 \u091c\u0948\u0935\u093f\u0915 \u0935\u093f\u0936\u0947\u0937\u0924\u093e\u0913\u0902 \u0926\u094d\u0935\u093e\u0930\u093e \u092a\u0930\u093f\u092d\u093e\u0937\u093f\u0924 \u0938\u094d\u0925\u093f\u0924\u093f \u0928\u0939\u0940\u0902 \u0930\u0939 \u0917\u0908 \u0939\u0948\u0964. <strong>\u0906\u091c, \u092f\u0939 \u0907\u0938 \u092c\u093e\u0924 \u0938\u0947 \u092d\u0940 \u0938\u092e\u093e\u0928 \u0930\u0942\u092a \u0938\u0947 \u092a\u0930\u093f\u092d\u093e\u0937\u093f\u0924 \u0939\u094b\u0924\u093e \u0939\u0948 \u0915\u093f \u0915\u093f\u0938\u0947 \u0909\u092a\u091a\u093e\u0930 \u092e\u093f\u0932 \u0938\u0915\u0924\u093e \u0939\u0948 \u0914\u0930 \u0915\u093f\u0938\u0947 \u0928\u0939\u0940\u0902\u0964.<\/strong> \u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940, \u090f\u0915\u094d\u0938\u0949\u0928-\u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0926\u0935\u093e\u0913\u0902 \u0914\u0930 \u092c\u0939\u0941\u0935\u093f\u0937\u092f\u0915 \u0926\u0947\u0916\u092d\u093e\u0932 \u092e\u0947\u0902 \u0939\u0941\u0908 \u092a\u094d\u0930\u092e\u0941\u0916 \u092a\u094d\u0930\u0917\u0924\u093f \u0915\u0947 \u092c\u093e\u0935\u091c\u0942\u0926, \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0935\u093f\u092d\u093f\u0928\u094d\u0928 \u0926\u0947\u0936\u094b\u0902, \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0926\u0947\u0916\u092d\u093e\u0932 \u092a\u094d\u0930\u0923\u093e\u0932\u093f\u092f\u094b\u0902 \u0914\u0930 \u0938\u093e\u092e\u093e\u091c\u093f\u0915-\u0906\u0930\u094d\u0925\u093f\u0915 \u0938\u092e\u0942\u0939\u094b\u0902 \u092e\u0947\u0902 \u0905\u0924\u094d\u092f\u0927\u093f\u0915 \u0905\u0938\u092e\u093e\u0928 \u092c\u0928\u0940 \u0939\u0941\u0908 \u0939\u0948\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e \u092d\u092f\u093e\u0935\u0939 \u0939\u0948: \u091c\u0939\u093e\u0901 \u0915\u0941\u091b \u092c\u091a\u094d\u091a\u094b\u0902 \u0915\u094b \u0917\u0924\u093f\u0936\u0940\u0932\u0924\u093e \u0914\u0930 \u091c\u0940\u0935\u0928 \u092a\u094d\u0930\u0924\u094d\u092f\u093e\u0936\u093e \u092c\u0922\u093c\u093e\u0928\u0947 \u0935\u093e\u0932\u0940 \u0905\u0924\u094d\u092f\u093e\u0927\u0941\u0928\u093f\u0915 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e\u090f\u0901 \u092e\u093f\u0932\u0924\u0940 \u0939\u0948\u0902, \u0935\u0939\u0940\u0902 \u0905\u0928\u094d\u092f \u092c\u091a\u094d\u091a\u094b\u0902 \u0915\u094b \u092c\u0941\u0928\u093f\u092f\u093e\u0926\u0940 \u0926\u0947\u0916\u092d\u093e\u0932 \u0938\u0947 \u092d\u0940 \u0935\u0902\u091a\u093f\u0924 \u0930\u0916\u093e \u091c\u093e\u0924\u093e \u0939\u0948\u0964 \u092f\u0939 \u0915\u094b\u0908 \u0935\u0948\u091c\u094d\u091e\u093e\u0928\u093f\u0915 \u0926\u094b\u0937 \u0928\u0939\u0940\u0902 \u0939\u0948\u0964. <strong>\u092f\u0939 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u092e\u0949\u0921\u0932, \u0928\u0940\u0924\u093f\u0917\u0924 \u0928\u093f\u0937\u094d\u0915\u094d\u0930\u093f\u092f\u0924\u093e \u0914\u0930 \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0905\u0938\u092e\u093e\u0928\u0924\u093e\u0913\u0902 \u0915\u0947 \u0915\u093e\u0930\u0923 \u0909\u0924\u094d\u092a\u0928\u094d\u0928 \u090f\u0915 \u092a\u094d\u0930\u0923\u093e\u0932\u0940\u0917\u0924 \u0935\u093f\u092b\u0932\u0924\u093e \u0939\u0948\u0964.<\/strong><\/p>\n\n\n\n<div class=\"wp-block-rank-math-toc-block\" id=\"rank-math-toc\"><h2>\u0935\u093f\u0937\u092f\u0938\u0942\u091a\u0940<\/h2><nav><ul><li><a href=\"#what-is-duchenne-muscular-dystrophy\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u094d\u092f\u093e \u0939\u0948?<\/a><\/li><li><a href=\"#the-current-landscape-of-duchenne-muscular-dystrophy-treatment-access\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u0940 \u0935\u0930\u094d\u0924\u092e\u093e\u0928 \u0938\u094d\u0925\u093f\u0924\u093f<\/a><\/li><li><a href=\"#why-duchenne-muscular-dystrophy-treatment-access-is-so-unequal\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0907\u0924\u0928\u0940 \u0905\u0938\u092e\u093e\u0928 \u0915\u094d\u092f\u094b\u0902 \u0939\u0948?<\/a><\/li><li><a href=\"#pharmaceutical-companies-and-duchenne-muscular-dystrophy-treatment-access\">\u092b\u093e\u0930\u094d\u092e\u093e\u0938\u094d\u092f\u0941\u091f\u093f\u0915\u0932 \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u0914\u0930 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a<\/a><\/li><li><a href=\"#government-responsibility-in-duchenne-muscular-dystrophy-treatment-access\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092e\u0947\u0902 \u0938\u0930\u0915\u093e\u0930 \u0915\u0940 \u091c\u093f\u092e\u094d\u092e\u0947\u0926\u093e\u0930\u0940<\/a><\/li><li><a href=\"#the-role-of-dmd-associations-in-treatment-access\">\u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092e\u0947\u0902 \u0921\u0940\u090f\u092e\u0921\u0940 \u090f\u0938\u094b\u0938\u093f\u090f\u0936\u0928\u094b\u0902 \u0915\u0940 \u092d\u0942\u092e\u093f\u0915\u093e<\/a><\/li><li><a href=\"#families-and-the-burden-of-access\">\u092a\u0930\u093f\u0935\u093e\u0930 \u0914\u0930 \u092a\u0939\u0941\u0902\u091a \u0915\u093e \u092c\u094b\u091d<\/a><\/li><li><a href=\"#clinical-evidence-supporting-early-and-equitable-access\">\u0936\u0940\u0918\u094d\u0930 \u0914\u0930 \u0938\u092e\u093e\u0928 \u092a\u0939\u0941\u0902\u091a \u0915\u093e \u0938\u092e\u0930\u094d\u0925\u0928 \u0915\u0930\u0928\u0947 \u0935\u093e\u0932\u0947 \u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u0938\u093e\u0915\u094d\u0937\u094d\u092f<\/a><\/li><li><a href=\"#ethical-imperative-access-as-a-human-right\">\u0928\u0948\u0924\u093f\u0915 \u0905\u0928\u093f\u0935\u093e\u0930\u094d\u092f\u0924\u093e: \u092e\u093e\u0928\u0935 \u0905\u0927\u093f\u0915\u093e\u0930 \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902 \u092a\u0939\u0941\u0902\u091a<\/a><\/li><li><a href=\"#solutions-to-improve-duchenne-muscular-dystrophy-treatment-access\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092e\u0947\u0902 \u0938\u0941\u0927\u093e\u0930 \u0915\u0947 \u0938\u092e\u093e\u0927\u093e\u0928<\/a><\/li><li><a href=\"#final-thoughts\">\u0905\u0902\u0924\u093f\u092e \u0935\u093f\u091a\u093e\u0930<\/a><\/li><\/ul><\/nav><\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"what-is-duchenne-muscular-dystrophy\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u094d\u092f\u093e \u0939\u0948?<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"genetic-basis-and-disease-mechanism\">\u0906\u0928\u0941\u0935\u0902\u0936\u093f\u0915 \u0906\u0927\u093e\u0930 \u0914\u0930 \u0930\u094b\u0917 \u0924\u0902\u0924\u094d\u0930<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940, \u090f\u0915\u094d\u0938 \u0915\u094d\u0930\u094b\u092e\u094b\u0938\u094b\u092e \u092a\u0930 \u0938\u094d\u0925\u093f\u0924 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u094b\u092b\u093f\u0928 \u091c\u0940\u0928 \u092e\u0947\u0902 \u0909\u0924\u094d\u092a\u0930\u093f\u0935\u0930\u094d\u0924\u0928 \u0915\u0947 \u0915\u093e\u0930\u0923 \u0939\u094b\u0924\u0940 \u0939\u0948\u0964 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u094b\u092b\u093f\u0928 \u0915\u0940 \u0905\u0928\u0941\u092a\u0938\u094d\u0925\u093f\u0924\u093f \u0938\u0947 \u092e\u093e\u0902\u0938\u092a\u0947\u0936\u093f\u092f\u094b\u0902 \u0915\u093e \u0915\u094d\u0930\u092e\u093f\u0915 \u0915\u094d\u0937\u0930\u0923, \u0926\u0940\u0930\u094d\u0918\u0915\u093e\u0932\u093f\u0915 \u0938\u0942\u091c\u0928 \u0914\u0930 \u0905\u0902\u0924\u0924\u0903 \u092e\u093e\u0902\u0938\u092a\u0947\u0936\u093f\u092f\u094b\u0902 \u0915\u0947 \u090a\u0924\u0915\u094b\u0902 \u0915\u093e \u0935\u0938\u093e \u0914\u0930 \u092b\u093e\u0907\u092c\u094d\u0930\u094b\u0938\u093f\u0938 \u0938\u0947 \u092a\u094d\u0930\u0924\u093f\u0938\u094d\u0925\u093e\u092a\u0928 \u0939\u094b\u0924\u093e \u0939\u0948\u0964 \u0914\u0930 \u092a\u0922\u093c\u0947\u0902:\u00a0<a href=\"https:\/\/dmdwarrior.com\/hi\/what-is-duchenne\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u0921\u094d\u092f\u0942\u091a\u0947\u0928 \u0915\u094d\u092f\u093e \u0939\u0948?<\/a><\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"clinical-progression-and-outcomes\">\u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u092a\u094d\u0930\u0917\u0924\u093f \u0914\u0930 \u092a\u0930\u093f\u0923\u093e\u092e<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0932\u0915\u094d\u0937\u0923\u094b\u0902 \u0915\u0940 \u0936\u0941\u0930\u0941\u0906\u0924: 2-5 \u0935\u0930\u094d\u0937 \u0915\u0940 \u0906\u092f\u0941<\/li>\n\n\n\n<li>\u091a\u0932\u0928\u0947-\u092b\u093f\u0930\u0928\u0947 \u0915\u0940 \u0915\u094d\u0937\u092e\u0924\u093e \u0915\u093e \u0928\u0941\u0915\u0938\u093e\u0928: \u0932\u0917\u092d\u0917 10-12 \u0935\u0930\u094d\u0937<\/li>\n\n\n\n<li>\u0939\u0943\u0926\u092f \u0915\u0940 \u0938\u0942\u091c\u0928 \u0914\u0930 \u0936\u094d\u0935\u0938\u0928 \u0935\u093f\u092b\u0932\u0924\u093e: \u0915\u093f\u0936\u094b\u0930\u093e\u0935\u0938\u094d\u0925\u093e<\/li>\n\n\n\n<li>\u091c\u0940\u0935\u0928 \u092a\u094d\u0930\u0924\u094d\u092f\u093e\u0936\u093e: \u0926\u0947\u0916\u092d\u093e\u0932 \u0938\u0947 \u0907\u0938\u092e\u0947\u0902 \u0915\u093e\u092b\u0940 \u0938\u0941\u0927\u093e\u0930 \u0939\u0941\u0906 \u0939\u0948, \u0932\u0947\u0915\u093f\u0928 \u092b\u093f\u0930 \u092d\u0940 \u092f\u0939 \u0938\u0940\u092e\u093f\u0924 \u0939\u0948\u0964<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/19945913\/\" target=\"_blank\" rel=\"noopener\">\u092c\u0941\u0936\u092c\u0940 \u090f\u091f \u0905\u0932 \u0915\u0947 \u0905\u0928\u0941\u0938\u093e\u0930\u0964.<\/a> (2010) \u0915\u0947 \u0905\u0928\u0941\u0938\u093e\u0930, \u092a\u094d\u0930\u093e\u0930\u0902\u092d\u093f\u0915 \u0939\u0938\u094d\u0924\u0915\u094d\u0937\u0947\u092a \u0914\u0930 \u092c\u0939\u0941\u0935\u093f\u0937\u092f\u0915 \u092a\u094d\u0930\u092c\u0902\u0927\u0928 \u0938\u0947 \u0909\u0924\u094d\u0924\u0930\u091c\u0940\u0935\u093f\u0924\u093e \u0914\u0930 \u091c\u0940\u0935\u0928 \u0915\u0940 \u0917\u0941\u0923\u0935\u0924\u094d\u0924\u093e \u092e\u0947\u0902 \u0915\u093e\u092b\u0940 \u0938\u0941\u0927\u093e\u0930 \u0939\u094b \u0938\u0915\u0924\u093e \u0939\u0948\u0964.<br><br>\u0914\u0930 \u0905\u0927\u093f\u0915 \u091c\u093e\u0928\u0947\u0902: <a href=\"https:\/\/dmdwarrior.com\/hi\/life-expectancy-in-duchenne-muscular-dystrophy\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u092e\u0947\u0902 \u091c\u0940\u0935\u0928 \u092a\u094d\u0930\u0924\u094d\u092f\u093e\u0936\u093e<\/a><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"the-current-landscape-of-duchenne-muscular-dystrophy-treatment-access\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u0940 \u0935\u0930\u094d\u0924\u092e\u093e\u0928 \u0938\u094d\u0925\u093f\u0924\u093f<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"available-therapies\">\u0909\u092a\u0932\u092c\u094d\u0927 \u0909\u092a\u091a\u093e\u0930<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0906\u0927\u0941\u0928\u093f\u0915 \u0921\u0940\u090f\u092e\u0921\u0940 \u0909\u092a\u091a\u093e\u0930 \u092e\u0947\u0902 \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0936\u093e\u092e\u093f\u0932 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0915\u0949\u0930\u094d\u091f\u093f\u0915\u094b\u0938\u094d\u091f\u0947\u0930\u0949\u0907\u0921\u094d\u0938 (\u0909\u092a\u091a\u093e\u0930 \u0915\u093e \u092e\u093e\u0928\u0915)<\/li>\n\n\n\n<li>\u0939\u0943\u0926\u092f \u0914\u0930 \u0936\u094d\u0935\u0938\u0928 \u0938\u0939\u093e\u092f\u0924\u093e<\/li>\n\n\n\n<li>\u090f\u0915\u094d\u0938\u0949\u0928-\u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0925\u0947\u0930\u0947\u092a\u0940 (\u0909\u0924\u094d\u092a\u0930\u093f\u0935\u0930\u094d\u0924\u0928-\u0935\u093f\u0936\u093f\u0937\u094d\u091f)<\/li>\n\n\n\n<li>\u091c\u0940\u0928 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e (\u0909\u092d\u0930\u0924\u0940 \u0939\u0941\u0908, \u0909\u091a\u094d\u091a \u0932\u093e\u0917\u0924 \u0935\u093e\u0932\u0940)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0914\u0930 \u0905\u0927\u093f\u0915 \u091c\u093e\u0928\u0947\u0902: <a href=\"https:\/\/dmdwarrior.com\/hi\/category\/care-guidelines\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u0915\u0947 \u0932\u093f\u090f \u0926\u0947\u0916\u092d\u093e\u0932 \u0938\u0902\u092c\u0902\u0927\u0940 \u0926\u093f\u0936\u093e\u0928\u093f\u0930\u094d\u0926\u0947\u0936<\/a><\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"the-access-gap\">\u092a\u0939\u0941\u0901\u091a \u0915\u093e \u0905\u0902\u0924\u0930<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0939\u093e\u0932\u093e\u0902\u0915\u093f \u0909\u092a\u091a\u093e\u0930 \u0909\u092a\u0932\u092c\u094d\u0927 \u0939\u0948\u0902, \u0932\u0947\u0915\u093f\u0928 \u0909\u0928\u0915\u0940 \u0909\u092a\u0932\u092c\u094d\u0927\u0924\u093e \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0915\u093e\u0930\u0915\u094b\u0902 \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930 \u0915\u0930\u0924\u0940 \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u092a\u094d\u0930\u0924\u093f\u092a\u0942\u0930\u094d\u0924\u093f \u0928\u0940\u0924\u093f\u092f\u093e\u0902<\/li>\n\n\n\n<li>\u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u0905\u0935\u0938\u0902\u0930\u091a\u0928\u093e<\/li>\n\n\n\n<li>\u0926\u0935\u093e\u0913\u0902 \u0915\u0940 \u0915\u0940\u092e\u0924 \u0914\u0930 \u0909\u092a\u0932\u092c\u094d\u0927\u0924\u093e<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0935\u093f\u0936\u094d\u0935 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0902\u0917\u0920\u0928 \u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u094b \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u092e\u093e\u0928\u0924\u093e \u0915\u0947 \u0938\u092c\u0938\u0947 \u0909\u092a\u0947\u0915\u094d\u0937\u093f\u0924 \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u094b\u0902 \u092e\u0947\u0902 \u0938\u0947 \u090f\u0915 \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902 \u0909\u091c\u093e\u0917\u0930 \u0915\u0930\u0924\u093e \u0939\u0948\u0964.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"why-duchenne-muscular-dystrophy-treatment-access-is-so-unequal\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0907\u0924\u0928\u0940 \u0905\u0938\u092e\u093e\u0928 \u0915\u094d\u092f\u094b\u0902 \u0939\u0948?<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"economic-barriers\">\u0906\u0930\u094d\u0925\u093f\u0915 \u092c\u093e\u0927\u093e\u090f\u0901<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0921\u0940\u090f\u092e\u0921\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u091c\u0917\u0924 \u092e\u0947\u0902 \u0938\u092c\u0938\u0947 \u092e\u0939\u0902\u0917\u0947 \u0909\u092a\u091a\u093e\u0930\u094b\u0902 \u092e\u0947\u0902 \u0938\u0947 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u090f\u0915\u094d\u0938\u0949\u0928-\u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0926\u0935\u093e\u090f\u0902: $300,000\u2013$1M \u092a\u094d\u0930\u0924\u093f \u0935\u0930\u094d\u0937<\/li>\n\n\n\n<li><a href=\"https:\/\/dmdwarrior.com\/hi\/elevidys-gene-therapy-efficacy-in-dmd\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940: \u092a\u094d\u0930\u0924\u093f \u0909\u092a\u091a\u093e\u0930 &gt;$2,9M<\/a><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0907\u0928 \u0932\u093e\u0917\u0924\u094b\u0902 \u0938\u0947 \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e\u0917\u0924 \u092c\u0939\u093f\u0937\u094d\u0915\u093e\u0930 \u0909\u0924\u094d\u092a\u0928\u094d\u0928 \u0939\u094b\u0924\u093e \u0939\u0948, \u0935\u093f\u0936\u0947\u0937 \u0930\u0942\u092a \u0938\u0947 \u0928\u093f\u092e\u094d\u0928 \u0914\u0930 \u092e\u0927\u094d\u092f\u092e \u0906\u092f \u0935\u093e\u0932\u0947 \u0926\u0947\u0936\u094b\u0902 \u092e\u0947\u0902\u0964.<\/strong><\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"regulatory-fragmentation\">\u0928\u093f\u092f\u093e\u092e\u0915 \u0935\u093f\u0916\u0902\u0921\u0928<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0905\u092e\u0947\u0930\u093f\u0915\u0940 \u0916\u093e\u0926\u094d\u092f \u090f\u0935\u0902 \u0914\u0937\u0927\u093f \u092a\u094d\u0930\u0936\u093e\u0938\u0928 \u091c\u0948\u0938\u0940 \u090f\u091c\u0947\u0902\u0938\u093f\u092f\u094b\u0902 \u0938\u0947 \u092e\u0902\u091c\u0942\u0930\u0940 \u092e\u093f\u0932\u0928\u0947 \u0915\u0947 \u092c\u093e\u0926 \u092d\u0940:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0938\u094d\u0924\u0930 \u092a\u0930 \u0938\u094d\u0935\u0940\u0915\u0943\u0924\u093f\u092f\u094b\u0902 \u092e\u0947\u0902 \u0926\u0947\u0930\u0940 \u0939\u094b \u0938\u0915\u0924\u0940 \u0939\u0948<\/li>\n\n\n\n<li>\u092a\u094d\u0930\u0924\u093f\u092a\u0942\u0930\u094d\u0924\u093f \u0938\u0902\u092c\u0902\u0927\u0940 \u0928\u093f\u0930\u094d\u0923\u092f \u0932\u0947\u0928\u0947 \u092e\u0947\u0902 \u0935\u0930\u094d\u0937\u094b\u0902 \u0932\u0917 \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964<\/li>\n\n\n\n<li>\u0926\u0947\u0930\u0940 \u0915\u0947 \u0926\u094c\u0930\u093e\u0928 \u092e\u0930\u0940\u091c\u094b\u0902 \u0915\u093e \u0907\u0932\u093e\u091c \u0928\u0939\u0940\u0902 \u0939\u094b \u092a\u093e\u0924\u093e \u0939\u0948\u0964<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"geographic-inequality\">\u092d\u094c\u0917\u094b\u0932\u093f\u0915 \u0905\u0938\u092e\u093e\u0928\u0924\u093e<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0909\u0924\u094d\u0924\u0930\u0940 \u0905\u092e\u0947\u0930\u093f\u0915\u093e \u0914\u0930 \u092a\u0936\u094d\u091a\u093f\u092e\u0940 \u092f\u0942\u0930\u094b\u092a \u0915\u0947 \u092e\u0930\u0940\u091c:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u092a\u0930\u0940\u0915\u094d\u0937\u0923\u094b\u0902 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a\u0947\u0902<\/li>\n\n\n\n<li>\u0936\u0940\u0918\u094d\u0930 \u0905\u0928\u0941\u092e\u094b\u0926\u0928 \u092a\u094d\u0930\u093e\u092a\u094d\u0924 \u0915\u0930\u0947\u0902<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0905\u0928\u094d\u092f \u0938\u094d\u0925\u093e\u0928\u094b\u0902 \u0915\u0947 \u092e\u0930\u0940\u091c:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0928\u093f\u0926\u093e\u0928 \u092e\u0947\u0902 \u0926\u0947\u0930\u0940 \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930\u0928\u093e \u092a\u0921\u093c \u0938\u0915\u0924\u093e \u0939\u0948<\/li>\n\n\n\n<li>\u092a\u0942\u0930\u0940 \u0924\u0930\u0939 \u0938\u0947 \u092a\u0939\u0941\u0902\u091a \u0915\u093e \u0905\u092d\u093e\u0935<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"pharmaceutical-companies-and-duchenne-muscular-dystrophy-treatment-access\">\u092b\u093e\u0930\u094d\u092e\u093e\u0938\u094d\u092f\u0941\u091f\u093f\u0915\u0932 \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u0914\u0930 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"pricing-strategies-and-market-exclusivity\">\u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u093e\u0901 \u0914\u0930 \u092c\u093e\u091c\u093c\u093e\u0930 \u092e\u0947\u0902 \u090f\u0915\u093e\u0927\u093f\u0915\u093e\u0930<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u090a\u0902\u091a\u0940 \u0915\u0940\u092e\u0924\u094b\u0902 \u0915\u094b \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0924\u0930\u0940\u0915\u094b\u0902 \u0938\u0947 \u0909\u091a\u093f\u0924 \u0920\u0939\u0930\u093e\u0924\u0940 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u090f\u0935\u0902 \u0935\u093f\u0915\u093e\u0938 \u0932\u093e\u0917\u0924<\/li>\n\n\n\n<li>\u0915\u092e \u0930\u094b\u0917\u0940 \u0906\u092c\u093e\u0926\u0940<\/li>\n\n\n\n<li>\u0928\u0935\u093e\u091a\u093e\u0930 \u091c\u094b\u0916\u093f\u092e<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0939\u093e\u0932\u093e\u0902\u0915\u093f, \u0938\u093e\u0915\u094d\u0937\u094d\u092f \u0926\u0930\u094d\u0936\u093e\u0924\u0947 \u0939\u0948\u0902 \u0915\u093f:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0938\u093e\u0930\u094d\u0935\u091c\u0928\u093f\u0915 \u0928\u093f\u0927\u093f \u0905\u0915\u094d\u0938\u0930 \u092a\u094d\u0930\u093e\u0930\u0902\u092d\u093f\u0915 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0915\u094b \u0938\u092e\u0930\u094d\u0925\u0928 \u0926\u0947\u0924\u0940 \u0939\u0948\u0964<\/li>\n\n\n\n<li>\u0932\u093e\u092d \u092e\u093e\u0930\u094d\u091c\u093f\u0928 \u0915\u093e\u092b\u0940 \u0905\u0927\u093f\u0915 \u0939\u094b \u0938\u0915\u0924\u093e \u0939\u0948<\/li>\n\n\n\n<li><strong>\u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u094b\u0902 \u0915\u094b \u0905\u0927\u093f\u0915\u0924\u092e \u0930\u093e\u091c\u0938\u094d\u0935 \u0915\u0947 \u0932\u093f\u090f \u0905\u0928\u0941\u0915\u0942\u0932\u093f\u0924 \u0915\u093f\u092f\u093e \u091c\u093e\u0924\u093e \u0939\u0948, \u0928 \u0915\u093f \u0905\u0927\u093f\u0915\u0924\u092e \u092a\u0939\u0941\u0902\u091a \u0915\u0947 \u0932\u093f\u090f\u0964<\/strong><\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"ethical-concerns\">\u0928\u0948\u0924\u093f\u0915 \u091a\u093f\u0902\u0924\u093e\u090f\u0901<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u091c\u092c \u091c\u0940\u0935\u0928 \u0930\u0915\u094d\u0937\u0915 \u0909\u092a\u091a\u093e\u0930 \u0907\u0924\u0928\u0947 \u092e\u0939\u0902\u0917\u0947 \u0939\u094b \u091c\u093e\u0924\u0947 \u0939\u0948\u0902 \u0915\u093f \u0935\u0947 \u0906\u092e \u091c\u0928\u0924\u093e \u0915\u0940 \u092a\u0939\u0941\u0902\u091a \u0938\u0947 \u092c\u093e\u0939\u0930 \u0939\u094b \u091c\u093e\u0924\u0947 \u0939\u0948\u0902, \u0924\u094b \u092e\u0941\u0926\u094d\u0926\u093e \u0905\u0930\u094d\u0925\u0936\u093e\u0938\u094d\u0924\u094d\u0930 \u0938\u0947 \u0939\u091f\u0915\u0930 \u0928\u0948\u0924\u093f\u0915\u0924\u093e \u0915\u0940 \u0913\u0930 \u092e\u0941\u0921\u093c \u091c\u093e\u0924\u093e \u0939\u0948\u0964.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">\u090f\u0915 \u0910\u0938\u093e \u0909\u092a\u091a\u093e\u0930 \u091c\u094b \u092e\u094c\u091c\u0942\u0926 \u0924\u094b \u0939\u0948 \u0932\u0947\u0915\u093f\u0928 \u0938\u0941\u0932\u092d \u0928\u0939\u0940\u0902 \u0939\u0948, \u0935\u0939 \u0928\u0935\u093e\u091a\u093e\u0930 \u0928\u0939\u0940\u0902 \u0939\u0948\u2014\u0935\u0939 \u092c\u0939\u093f\u0937\u094d\u0915\u093e\u0930 \u0939\u0948\u0964.<\/p>\n<\/blockquote>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"what-pharmaceutical-companies-should-do\">\u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u094b\u0902 \u0915\u094b \u0915\u094d\u092f\u093e \u0915\u0930\u0928\u093e \u091a\u093e\u0939\u093f\u090f<\/h3>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"implement-tiered-pricing\">\u0938\u094d\u0924\u0930\u0940\u092f \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0932\u093e\u0917\u0942 \u0915\u0930\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0906\u092f \u0938\u094d\u0924\u0930 \u0915\u0947 \u0906\u0927\u093e\u0930 \u092a\u0930 \u0915\u0940\u092e\u0924\u094b\u0902 \u092e\u0947\u0902 \u0938\u092e\u093e\u092f\u094b\u091c\u0928 \u0915\u0930\u0947\u0902\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"expand-global-access-programs\">\u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e\u094b\u0902 \u0915\u093e \u0935\u093f\u0938\u094d\u0924\u093e\u0930 \u0915\u0930\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u092f\u0939 \u0938\u0941\u0928\u093f\u0936\u094d\u091a\u093f\u0924 \u0915\u0930\u0947\u0902 \u0915\u093f \u0926\u092f\u093e\u0932\u0941\u0924\u093e\u092a\u0942\u0930\u094d\u0923 \u0909\u092a\u092f\u094b\u0917 \u091a\u0941\u0928\u093f\u0902\u0926\u093e \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u094b\u0902 \u0924\u0915 \u0938\u0940\u092e\u093f\u0924 \u0928 \u0930\u0939\u0947\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"increase-transparency\">\u092a\u093e\u0930\u0926\u0930\u094d\u0936\u093f\u0924\u093e \u092c\u0922\u093c\u093e\u090f\u0901<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u090f\u0935\u0902 \u0935\u093f\u0915\u093e\u0938 \u0924\u0925\u093e \u0909\u0924\u094d\u092a\u093e\u0926\u0928 \u0932\u093e\u0917\u0924\u094b\u0902 \u0915\u093e \u0916\u0941\u0932\u093e\u0938\u093e \u0915\u0930\u0947\u0902\u0964.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"government-responsibility-in-duchenne-muscular-dystrophy-treatment-access\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092e\u0947\u0902 \u0938\u0930\u0915\u093e\u0930 \u0915\u0940 \u091c\u093f\u092e\u094d\u092e\u0947\u0926\u093e\u0930\u0940<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"budget-priorities\">\u092c\u091c\u091f \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e\u090f\u0901<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u0930\u0915\u094d\u0937\u093e \u092a\u0930 \u0905\u0930\u092c\u094b\u0902 \u0921\u0949\u0932\u0930 \u0916\u0930\u094d\u091a \u0915\u0930\u0924\u0940 \u0939\u0948\u0902 \u091c\u092c\u0915\u093f:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u092e\u093f\u0932\u0928\u0947 \u0935\u093e\u0932\u093e \u0927\u0928 \u0905\u092d\u0940 \u092d\u0940 \u092c\u0939\u0941\u0924 \u0915\u092e \u0939\u0948\u0964<\/li>\n\n\n\n<li>\u092a\u094d\u0930\u0924\u093f\u092a\u0942\u0930\u094d\u0924\u093f \u092a\u094d\u0930\u0923\u093e\u0932\u093f\u092f\u093e\u0901 \u0909\u091a\u094d\u091a \u0932\u093e\u0917\u0924 \u0935\u093e\u0932\u0940 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u092a\u0926\u094d\u0927\u0924\u093f\u092f\u094b\u0902 \u0915\u094b \u092c\u093e\u0939\u0930 \u0930\u0916\u0924\u0940 \u0939\u0948\u0902\u0964<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u092f\u0939 \u0928\u0940\u0924\u093f\u0917\u0924 \u0935\u093f\u0915\u0932\u094d\u092a\u094b\u0902 \u0915\u094b \u0926\u0930\u094d\u0936\u093e\u0924\u093e \u0939\u0948, \u0928 \u0915\u093f \u0938\u0902\u0938\u093e\u0927\u0928\u094b\u0902 \u0915\u0940 \u0915\u092e\u0940 \u0915\u094b\u0964.<\/strong><\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"policy-failures\">\u0928\u0940\u0924\u093f\u0917\u0924 \u0935\u093f\u092b\u0932\u0924\u093e\u090f\u0901<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u092a\u094d\u0930\u0924\u093f\u092a\u0942\u0930\u094d\u0924\u093f \u0928\u093f\u0930\u094d\u0923\u092f\u094b\u0902 \u092e\u0947\u0902 \u0926\u0947\u0930\u0940<\/li>\n\n\n\n<li>\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u094b\u0902 \u0915\u093e \u0905\u092d\u093e\u0935<\/li>\n\n\n\n<li>\u0905\u092a\u0930\u094d\u092f\u093e\u092a\u094d\u0924 \u0938\u094d\u0915\u094d\u0930\u0940\u0928\u093f\u0902\u0917 \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"what-governments-should-do\">\u0938\u0930\u0915\u093e\u0930\u094b\u0902 \u0915\u094b \u0915\u094d\u092f\u093e \u0915\u0930\u0928\u093e \u091a\u093e\u0939\u093f\u090f<\/h3>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"establish-rare-disease-funds\">\u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0915\u094b\u0937 \u0938\u094d\u0925\u093e\u092a\u093f\u0924 \u0915\u0930\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0909\u091a\u094d\u091a \u0932\u093e\u0917\u0924 \u0935\u093e\u0932\u0940 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u092a\u0926\u094d\u0927\u0924\u093f\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u0938\u092e\u0930\u094d\u092a\u093f\u0924 \u092c\u091c\u091f\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"accelerate-reimbursement-pathways\">\u092a\u094d\u0930\u0924\u093f\u092a\u0942\u0930\u094d\u0924\u093f \u092a\u094d\u0930\u0915\u094d\u0930\u093f\u092f\u093e\u0913\u0902 \u0915\u094b \u0917\u0924\u093f \u0926\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0905\u0928\u0941\u092e\u094b\u0926\u0928 \u0914\u0930 \u092a\u0939\u0941\u0902\u091a \u0915\u0947 \u092c\u0940\u091a \u0939\u094b\u0928\u0947 \u0935\u093e\u0932\u0940 \u0926\u0947\u0930\u0940 \u0915\u094b \u0915\u092e \u0915\u0930\u0947\u0902\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"implement-newborn-screening\">\u0928\u0935\u091c\u093e\u0924 \u0936\u093f\u0936\u0941\u0913\u0902 \u0915\u0940 \u0938\u094d\u0915\u094d\u0930\u0940\u0928\u093f\u0902\u0917 \u0932\u093e\u0917\u0942 \u0915\u0930\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0936\u0940\u0918\u094d\u0930 \u0928\u093f\u0926\u093e\u0928 \u0938\u0947 \u0936\u0940\u0918\u094d\u0930 \u0909\u092a\u091a\u093e\u0930 \u0938\u0902\u092d\u0935 \u0939\u094b \u092a\u093e\u0924\u093e \u0939\u0948\u0964.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"the-role-of-dmd-associations-in-treatment-access\">\u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092e\u0947\u0902 \u0921\u0940\u090f\u092e\u0921\u0940 \u090f\u0938\u094b\u0938\u093f\u090f\u0936\u0928\u094b\u0902 \u0915\u0940 \u092d\u0942\u092e\u093f\u0915\u093e<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"advocacy-achievements\">\u092a\u0948\u0930\u0935\u0940 \u0938\u0902\u092c\u0902\u0927\u0940 \u0909\u092a\u0932\u092c\u094d\u0927\u093f\u092f\u093e\u0901<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0930\u094b\u0917\u0940 \u0938\u0902\u0917\u0920\u0928\u094b\u0902 \u0915\u0947 \u092a\u093e\u0938 \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092c\u0922\u093c\u093e\u0908<\/li>\n\n\n\n<li>\u0938\u092e\u0930\u094d\u0925\u093f\u0924 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0928\u093f\u0927\u093f<\/li>\n\n\n\n<li>\u092a\u094d\u0930\u092d\u093e\u0935\u093f\u0924 \u0935\u093f\u0928\u093f\u092f\u093e\u092e\u0915 \u092e\u093e\u0930\u094d\u0917<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"limitations-and-challenges\">\u0938\u0940\u092e\u093e\u090f\u0902 \u0914\u0930 \u091a\u0941\u0928\u094c\u0924\u093f\u092f\u093e\u0902<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0915\u0941\u091b \u0938\u0902\u0917\u0920\u0928\u094b\u0902 \u0915\u094b \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0938\u092e\u0938\u094d\u092f\u093e\u0913\u0902 \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930\u0928\u093e \u092a\u0921\u093c\u0924\u093e \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0909\u0926\u094d\u092f\u094b\u0917 \u0938\u0947 \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0938\u0902\u092c\u0902\u0927<\/li>\n\n\n\n<li>\u0938\u0940\u092e\u093f\u0924 \u0928\u0940\u0924\u093f\u0917\u0924 \u092a\u094d\u0930\u092d\u093e\u0935<\/li>\n\n\n\n<li>\u092a\u0939\u0941\u0901\u091a \u0915\u0940 \u0905\u092a\u0947\u0915\u094d\u0937\u093e \u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092a\u0930 \u0905\u0927\u093f\u0915 \u091c\u094b\u0930<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"what-associations-should-do\">\u0938\u0902\u0917\u0920\u0928\u094b\u0902 \u0915\u094b \u0915\u094d\u092f\u093e \u0915\u0930\u0928\u093e \u091a\u093e\u0939\u093f\u090f<\/h3>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"strengthen-policy-advocacy\">\u0928\u0940\u0924\u093f\u0917\u0924 \u0935\u0915\u093e\u0932\u0924 \u0915\u094b \u092e\u091c\u092c\u0942\u0924 \u0915\u0930\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e\u0917\u0924 \u092c\u0926\u0932\u093e\u0935 \u092a\u0930 \u0927\u094d\u092f\u093e\u0928 \u0915\u0947\u0902\u0926\u094d\u0930\u093f\u0924 \u0915\u0930\u0947\u0902\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"maintain-independence\">\u0938\u094d\u0935\u0924\u0902\u0924\u094d\u0930\u0924\u093e \u092c\u0928\u093e\u090f \u0930\u0916\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0939\u093f\u0924\u094b\u0902 \u0915\u0947 \u091f\u0915\u0930\u093e\u0935 \u0938\u0947 \u092c\u091a\u0947\u0902\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"build-global-coalitions\">\u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0917\u0920\u092c\u0902\u0927\u0928 \u092c\u0928\u093e\u090f\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0905\u0902\u0924\u0930\u094d\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0938\u094d\u0924\u0930 \u092a\u0930 \u092a\u0948\u0930\u0935\u0940 \u092a\u094d\u0930\u092f\u093e\u0938\u094b\u0902 \u0915\u093e \u0938\u092e\u0928\u094d\u0935\u092f \u0915\u0930\u0947\u0902\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0914\u0930 \u0905\u0927\u093f\u0915 \u091c\u093e\u0928\u0947\u0902: <a href=\"https:\/\/dmdwarrior.com\/hi\/dmd-donations-how-associations-use-donations\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 (\u0921\u0940\u090f\u092e\u0921\u0940) \u090f\u0938\u094b\u0938\u093f\u090f\u0936\u0928\u094b\u0902 \u092e\u0947\u0902 \u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u093e \u0938\u0902\u0915\u091f<\/a><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"families-and-the-burden-of-access\">\u092a\u0930\u093f\u0935\u093e\u0930 \u0914\u0930 \u092a\u0939\u0941\u0902\u091a \u0915\u093e \u092c\u094b\u091d<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"navigating-complex-systems\">\u091c\u091f\u093f\u0932 \u092a\u094d\u0930\u0923\u093e\u0932\u093f\u092f\u094b\u0902 \u0915\u094b \u0938\u092e\u091d\u0928\u093e<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0915\u0930\u0928\u093e \u0939\u094b\u0917\u093e:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0906\u0928\u0941\u0935\u0902\u0936\u093f\u0915 \u0930\u093f\u092a\u094b\u0930\u094d\u091f\u094b\u0902 \u0915\u0940 \u0935\u094d\u092f\u093e\u0916\u094d\u092f\u093e \u0915\u0930\u0947\u0902<\/li>\n\n\n\n<li>\u0909\u092a\u091a\u093e\u0930 \u0915\u0947 \u0932\u093f\u090f \u092a\u0948\u0930\u0935\u0940 \u0915\u0930\u0947\u0902<\/li>\n\n\n\n<li>\u0938\u0941\u0930\u0915\u094d\u0937\u093f\u0924 \u0928\u093f\u0927\u093f<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"the-rise-of-crowdfunding\">\u0915\u094d\u0930\u093e\u0909\u0921\u092b\u0902\u0921\u093f\u0902\u0917 \u0915\u093e \u0909\u0926\u092f<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0915\u0908 \u092a\u0930\u093f\u0935\u093e\u0930 \u0907\u0928 \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930 \u0915\u0930\u0924\u0947 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0938\u093e\u0930\u094d\u0935\u091c\u0928\u093f\u0915 \u0926\u093e\u0928<\/li>\n\n\n\n<li>\u0938\u094b\u0936\u0932 \u092e\u0940\u0921\u093f\u092f\u093e \u0905\u092d\u093f\u092f\u093e\u0928<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938\u0938\u0947 \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0915\u0947 \u092c\u091c\u093e\u092f \u0926\u0943\u0936\u094d\u092f\u0924\u093e \u0915\u0947 \u0906\u0927\u093e\u0930 \u092a\u0930 \u0905\u0938\u092e\u093e\u0928\u0924\u093e \u0909\u0924\u094d\u092a\u0928\u094d\u0928 \u0939\u094b\u0924\u0940 \u0939\u0948\u0964.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"what-families-can-do\">\u092a\u0930\u093f\u0935\u093e\u0930 \u0915\u094d\u092f\u093e \u0915\u0930 \u0938\u0915\u0924\u0947 \u0939\u0948\u0902<\/h3>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"collective-advocacy\">\u0938\u093e\u092e\u0942\u0939\u093f\u0915 \u0935\u0915\u093e\u0932\u0924<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0906\u0935\u093e\u091c\u094b\u0902 \u0915\u094b \u092c\u0941\u0932\u0902\u0926 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0928\u0947\u091f\u0935\u0930\u094d\u0915 \u0938\u0947 \u091c\u0941\u0921\u093c\u0947\u0902\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"demand-policy-change\">\u0928\u0940\u0924\u093f \u092a\u0930\u093f\u0935\u0930\u094d\u0924\u0928 \u0915\u0940 \u092e\u093e\u0902\u0917 \u0915\u0930\u0947\u0902<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">\u0926\u093e\u0928-\u092a\u0941\u0923\u094d\u092f \u0938\u0947 \u0927\u094d\u092f\u093e\u0928 \u0939\u091f\u093e\u0915\u0930 \u0905\u0927\u093f\u0915\u093e\u0930\u094b\u0902 \u092a\u0930 \u0927\u094d\u092f\u093e\u0928 \u0915\u0947\u0902\u0926\u094d\u0930\u093f\u0924 \u0915\u0930\u0947\u0902\u0964.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"clinical-evidence-supporting-early-and-equitable-access\">\u0936\u0940\u0918\u094d\u0930 \u0914\u0930 \u0938\u092e\u093e\u0928 \u092a\u0939\u0941\u0902\u091a \u0915\u093e \u0938\u092e\u0930\u094d\u0925\u0928 \u0915\u0930\u0928\u0947 \u0935\u093e\u0932\u0947 \u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u0938\u093e\u0915\u094d\u0937\u094d\u092f<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"key-studies\">\u092a\u094d\u0930\u092e\u0941\u0916 \u0905\u0927\u094d\u092f\u092f\u0928<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong><a href=\"https:\/\/www.cell.com\/molecular-therapy-family\/molecular-therapy\/fulltext\/S1525-0016(20)30664-X\" target=\"_blank\" rel=\"noreferrer noopener\">\u092e\u0947\u0902\u0921\u0947\u0932 \u091c\u0947\u0906\u0930 \u090f\u091f \u0905\u0932. (2020)<\/a><\/strong> \u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940 \u0938\u0947 \u0915\u093e\u0930\u094d\u092f\u093e\u0924\u094d\u092e\u0915 \u0938\u0941\u0927\u093e\u0930 \u0926\u0947\u0916\u0928\u0947 \u0915\u094b \u092e\u093f\u0932\u0924\u093e \u0939\u0948\u0964<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.thelancet.com\/journals\/laneur\/article\/PIIS1474-4422(18)30024-3\/abstract\" target=\"_blank\" rel=\"noreferrer noopener\">\u092c\u093f\u0930\u0928\u0915\u094d\u0930\u093e\u0902\u091f \u0921\u0940\u091c\u0947 \u090f\u091f \u0905\u0932. (2018)<\/a><\/strong> \u2013 \u092c\u0939\u0941\u0935\u093f\u0937\u092f\u0915 \u0926\u0947\u0916\u092d\u093e\u0932 \u0938\u0947 \u091c\u0940\u0935\u093f\u0924 \u0930\u0939\u0928\u0947 \u0915\u0940 \u0938\u0902\u092d\u093e\u0935\u0928\u093e \u092c\u0947\u0939\u0924\u0930 \u0939\u094b\u0924\u0940 \u0939\u0948<\/li>\n\n\n\n<li><strong>\u092c\u0941\u0936\u092c\u0940 \u0915\u0947 \u090f\u091f \u0905\u0932. (2014)<\/strong> \u2013 \u0936\u0940\u0918\u094d\u0930 \u0928\u093f\u0926\u093e\u0928 \u0914\u0930 \u0909\u092a\u091a\u093e\u0930 \u0905\u0924\u094d\u092f\u0902\u0924 \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u0939\u0948\u0902<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u092f\u0947 \u0905\u0927\u094d\u092f\u092f\u0928 \u092a\u0941\u0937\u094d\u091f\u093f \u0915\u0930\u0924\u0947 \u0939\u0948\u0902:<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">\u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u093e \u0938\u0940\u0927\u093e \u092a\u094d\u0930\u092d\u093e\u0935 \u092a\u0930\u093f\u0923\u093e\u092e\u094b\u0902 \u092a\u0930 \u092a\u0921\u093c\u0924\u093e \u0939\u0948\u0964.<\/p>\n<\/blockquote>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"ethical-imperative-access-as-a-human-right\">\u0928\u0948\u0924\u093f\u0915 \u0905\u0928\u093f\u0935\u093e\u0930\u094d\u092f\u0924\u093e: \u092e\u093e\u0928\u0935 \u0905\u0927\u093f\u0915\u093e\u0930 \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902 \u092a\u0939\u0941\u0902\u091a<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0938\u0902\u092f\u0941\u0915\u094d\u0924 \u0930\u093e\u0937\u094d\u091f\u094d\u0930 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0915\u094b \u090f\u0915 \u092e\u094c\u0932\u093f\u0915 \u092e\u093e\u0928\u0935\u093e\u0927\u093f\u0915\u093e\u0930 \u092e\u093e\u0928\u0924\u093e \u0939\u0948\u0964 \u092b\u093f\u0930 \u092d\u0940 \u0921\u0940\u090f\u092e\u0921\u0940 \u092e\u0947\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u092a\u0939\u0941\u0901\u091a \u092d\u094c\u0917\u094b\u0932\u093f\u0915 \u0938\u094d\u0925\u093f\u0924\u093f \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930 \u0915\u0930\u0924\u0940 \u0939\u0948\u0964<\/li>\n\n\n\n<li>\u0907\u0932\u093e\u091c \u0906\u0930\u094d\u0925\u093f\u0915 \u0938\u094d\u0925\u093f\u0924\u093f \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930 \u0915\u0930\u0924\u093e \u0939\u0948\u0964<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u092f\u0939 \u0935\u093f\u0930\u094b\u0927\u093e\u092d\u093e\u0938 \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u092e\u093e\u0928\u0924\u093e \u0915\u094b \u0915\u092e\u091c\u094b\u0930 \u0915\u0930\u0924\u093e \u0939\u0948\u0964.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"solutions-to-improve-duchenne-muscular-dystrophy-treatment-access\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092e\u0947\u0902 \u0938\u0941\u0927\u093e\u0930 \u0915\u0947 \u0938\u092e\u093e\u0927\u093e\u0928<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"global-pricing-reform\">\u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0938\u0941\u0927\u093e\u0930<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0938\u094d\u0924\u0930\u0940\u092f \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u092e\u0949\u0921\u0932<\/li>\n\n\n\n<li>\u0905\u0902\u0924\u0930\u094d\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0935\u093e\u0930\u094d\u0924\u093e \u0922\u093e\u0901\u091a\u0947<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"public-private-partnerships\">\u0938\u093e\u0930\u094d\u0935\u091c\u0928\u093f\u0915-\u0928\u093f\u091c\u0940 \u092d\u093e\u0917\u0940\u0926\u093e\u0930\u0940<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0914\u0930 \u092a\u0939\u0941\u0902\u091a \u0915\u0947 \u0932\u093f\u090f \u0938\u093e\u091d\u093e \u0935\u093f\u0924\u094d\u0924 \u092a\u094b\u0937\u0923<\/li>\n\n\n\n<li>\u091c\u094b\u0916\u093f\u092e \u0938\u093e\u091d\u093e\u0915\u0930\u0923 \u0938\u092e\u091d\u094c\u0924\u0947<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"expanded-clinical-trials\">\u0935\u093f\u0938\u094d\u0924\u093e\u0930\u093f\u0924 \u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u092a\u0930\u0940\u0915\u094d\u0937\u0923<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0932\u094d\u092a \u092a\u094d\u0930\u0924\u093f\u0928\u093f\u0927\u093f\u0924\u094d\u0935 \u0935\u093e\u0932\u0947 \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u094b\u0902 \u0915\u094b \u0936\u093e\u092e\u093f\u0932 \u0915\u0930\u0928\u093e<\/li>\n\n\n\n<li>\u0905\u0935\u0938\u0902\u0930\u091a\u0928\u093e \u0928\u093f\u0935\u0947\u0936<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"data-sharing-and-collaboration\">\u0921\u0947\u091f\u093e \u0938\u093e\u091d\u093e\u0915\u0930\u0923 \u0914\u0930 \u0938\u0939\u092f\u094b\u0917<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0930\u091c\u093f\u0938\u094d\u091f\u094d\u0930\u093f\u092f\u093e\u0902<\/li>\n\n\n\n<li>\u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915 \u0926\u0941\u0928\u093f\u092f\u093e \u0915\u0947 \u0938\u093e\u0915\u094d\u0937\u094d\u092f \u0938\u0902\u0917\u094d\u0930\u0939<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"final-thoughts\">\u0905\u0902\u0924\u093f\u092e \u0935\u093f\u091a\u093e\u0930<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u092f\u0926\u093f \u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u092c\u093e\u0930-\u092c\u093e\u0930 \u092f\u0939 \u0926\u093e\u0935\u093e \u0915\u0930\u0924\u0940 \u0939\u0948\u0902 \u0915\u093f \u0909\u0928\u0915\u0940 \u0905\u0930\u094d\u0925\u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e\u090f\u0902 &quot;\u092e\u091c\u092c\u0942\u0924&quot; \u0939\u0948\u0902, \u092b\u093f\u0930 \u092d\u0940 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0938\u0941\u0928\u093f\u0936\u094d\u091a\u093f\u0924 \u0915\u0930\u0928\u0947 \u092e\u0947\u0902 \u0935\u093f\u092b\u0932 \u0930\u0939\u0924\u0940 \u0939\u0948\u0902, \u0924\u094b \u0907\u0938 \u0935\u093f\u0930\u094b\u0927\u093e\u092d\u093e\u0938 \u0915\u094b \u0928\u091c\u0930\u0905\u0902\u0926\u093e\u091c \u0915\u0930\u0928\u093e \u0905\u0938\u0902\u092d\u0935 \u0939\u0948\u0964.<\/strong> \u0906\u0930\u094d\u0925\u093f\u0915 \u0936\u0915\u094d\u0924\u093f \u0915\u093e \u092e\u093e\u092a \u0915\u0947\u0935\u0932 \u091c\u0940\u0921\u0940\u092a\u0940 \u0915\u0947 \u0906\u0902\u0915\u0921\u093c\u094b\u0902, \u0905\u0935\u0938\u0902\u0930\u091a\u0928\u093e \u092a\u0930\u093f\u092f\u094b\u091c\u0928\u093e\u0913\u0902 \u092f\u093e \u0930\u0915\u094d\u0937\u093e \u0916\u0930\u094d\u091a \u0938\u0947 \u0928\u0939\u0940\u0902 \u0915\u093f\u092f\u093e \u091c\u093e\u0924\u093e \u0939\u0948 - \u0907\u0938\u0915\u093e \u092e\u093e\u092a \u0915\u093f\u0938\u0940 \u092a\u094d\u0930\u0923\u093e\u0932\u0940 \u0915\u0940 \u0905\u092a\u0928\u0947 \u0938\u092c\u0938\u0947 \u0915\u092e\u091c\u094b\u0930 \u0928\u093e\u0917\u0930\u093f\u0915\u094b\u0902 \u0915\u0940 \u0930\u0915\u094d\u0937\u093e \u0915\u0930\u0928\u0947 \u0915\u0940 \u0915\u094d\u0937\u092e\u0924\u093e \u0938\u0947 \u0915\u093f\u092f\u093e \u091c\u093e\u0924\u093e \u0939\u0948 \u091c\u092c \u0907\u0938\u0915\u0940 \u0938\u092c\u0938\u0947 \u0905\u0927\u093f\u0915 \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0939\u094b\u0924\u0940 \u0939\u0948\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u091c\u092c \u0915\u094b\u0908 \u0926\u0947\u0936 \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u094b\u0902 \u0915\u0947 \u0938\u093e\u0925 \u091f\u093f\u0915\u093e\u090a \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u092a\u0930 \u092c\u093e\u0924\u091a\u0940\u0924 \u0928\u0939\u0940\u0902 \u0915\u0930 \u0938\u0915\u0924\u093e, \u0918\u0930\u0947\u0932\u0942 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0914\u0930 \u0909\u0924\u094d\u092a\u093e\u0926\u0928 \u092e\u0947\u0902 \u0928\u093f\u0935\u0947\u0936 \u0928\u0939\u0940\u0902 \u0915\u0930 \u0938\u0915\u0924\u093e, \u0914\u0930 \u091c\u0940\u0935\u0928 \u0930\u0915\u094d\u0937\u0915 \u0909\u092a\u091a\u093e\u0930\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u092a\u094d\u0930\u092d\u093e\u0935\u0940 \u092a\u094d\u0930\u0924\u093f\u092a\u0942\u0930\u094d\u0924\u093f \u092e\u093e\u0930\u094d\u0917 \u0938\u094d\u0925\u093e\u092a\u093f\u0924 \u0928\u0939\u0940\u0902 \u0915\u0930 \u0938\u0915\u0924\u093e, \u0924\u094b \u092f\u0939 \u090f\u0915 \u0905\u0938\u094d\u0925\u093e\u092f\u0940 \u0938\u0940\u092e\u093e \u0928\u0939\u0940\u0902 \u0939\u0948 - \u092f\u0939 \u090f\u0915 \u0938\u0902\u0930\u091a\u0928\u093e\u0924\u094d\u092e\u0915 \u0915\u092e\u091c\u094b\u0930\u0940 \u0939\u0948\u0964.<\/strong> \u0907\u0938\u0938\u0947 \u0936\u093e\u0938\u0928, \u0928\u0940\u0924\u093f \u0928\u093f\u0930\u094d\u092e\u093e\u0923 \u0914\u0930 \u0930\u0923\u0928\u0940\u0924\u093f\u0915 \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e\u0913\u0902 \u092e\u0947\u0902 \u0915\u092e\u093f\u092f\u093e\u0902 \u0909\u091c\u093e\u0917\u0930 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902\u0964 \u090f\u0915 \u0935\u093e\u0938\u094d\u0924\u0935 \u092e\u0947\u0902 \u0938\u0936\u0915\u094d\u0924 \u0930\u093e\u091c\u094d\u092f \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u091c\u0940\u0935\u0928\u092f\u093e\u092a\u0928 \u0915\u0947 \u0932\u093f\u090f \u0927\u0928 \u091c\u0941\u091f\u093e\u0928\u0947 \u092f\u093e \u0928\u094c\u0915\u0930\u0936\u093e\u0939\u0940 \u0915\u0940 \u0926\u0947\u0930\u0940 \u0938\u0947 \u091c\u0942\u091d\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0905\u0915\u0947\u0932\u093e \u0928\u0939\u0940\u0902 \u091b\u094b\u0921\u093c\u0924\u093e, \u091c\u092c\u0915\u093f \u090f\u0915 \u0917\u0902\u092d\u0940\u0930 \u092c\u0940\u092e\u093e\u0930\u0940 \u092c\u0922\u093c\u0924\u0940 \u0930\u0939\u0924\u0940 \u0939\u0948\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938\u0940 \u092a\u094d\u0930\u0915\u093e\u0930, \u0909\u0926\u094d\u092f\u094b\u0917 \u091c\u0917\u0924 \u0915\u0947 \u0938\u093e\u0925 \u0938\u093e\u0930\u094d\u0925\u0915 \u0938\u0902\u0935\u093e\u0926 \u0938\u094d\u0925\u093e\u092a\u093f\u0924 \u0915\u0930\u0928\u0947 \u092e\u0947\u0902 \u0935\u093f\u092b\u0932\u0924\u093e\u2014\u091a\u093e\u0939\u0947 \u0935\u0939 \u0905\u0902\u0924\u0930\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0917\u0920\u092c\u0902\u0927\u0928\u094b\u0902, \u0938\u093e\u092e\u0942\u0939\u093f\u0915 \u0916\u0930\u0940\u0926 \u092f\u093e \u0928\u0935\u0940\u0928 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0938\u092e\u091d\u094c\u0924\u094b\u0902 \u0915\u0947 \u092e\u093e\u0927\u094d\u092f\u092e \u0938\u0947 \u0939\u094b\u2014\u0928 \u0915\u0947\u0935\u0932 \u0906\u0930\u094d\u0925\u093f\u0915 \u092c\u093e\u0927\u093e\u0913\u0902 \u0915\u094b \u0926\u0930\u094d\u0936\u093e\u0924\u0940 \u0939\u0948, \u092c\u0932\u094d\u0915\u093f \u0930\u093e\u091c\u0928\u0940\u0924\u093f\u0915 \u0915\u094d\u0937\u092e\u0924\u093e \u0914\u0930 \u0935\u093e\u0930\u094d\u0924\u093e \u0915\u094c\u0936\u0932 \u0915\u0940 \u0915\u092e\u0940 \u0915\u094b \u092d\u0940 \u0909\u091c\u093e\u0917\u0930 \u0915\u0930\u0924\u0940 \u0939\u0948\u0964 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0928\u0940\u0924\u093f \u0915\u094b\u0908 \u092a\u0943\u0925\u0915 \u0915\u094d\u0937\u0947\u0924\u094d\u0930 \u0928\u0939\u0940\u0902 \u0939\u0948; \u092f\u0939 \u0907\u0938 \u092c\u093e\u0924 \u0915\u093e \u092a\u094d\u0930\u0924\u093f\u092c\u093f\u0902\u092c \u0939\u0948 \u0915\u093f \u0915\u094b\u0908 \u0938\u0930\u0915\u093e\u0930 \u0938\u0902\u0938\u093e\u0927\u0928\u094b\u0902 \u0915\u094b \u092a\u0930\u093f\u0923\u093e\u092e\u094b\u0902 \u092e\u0947\u0902 \u0915\u093f\u0924\u0928\u0940 \u092a\u094d\u0930\u092d\u093e\u0935\u0940 \u0922\u0902\u0917 \u0938\u0947 \u092a\u0930\u093f\u0935\u0930\u094d\u0924\u093f\u0924 \u0915\u0930 \u0938\u0915\u0924\u0940 \u0939\u0948\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e \u0905\u0938\u0939\u091c \u0939\u0948: \u092f\u0926\u093f \u0915\u094b\u0908 \u092a\u094d\u0930\u0923\u093e\u0932\u0940 \u091c\u094d\u091e\u093e\u0924 \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0914\u0930 \u0909\u092a\u0932\u092c\u094d\u0927 \u0935\u093f\u091c\u094d\u091e\u093e\u0928 \u0915\u0947 \u092c\u093e\u0935\u091c\u0942\u0926 \u0906\u0935\u0936\u094d\u092f\u0915 \u0909\u092a\u091a\u093e\u0930\u094b\u0902 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u092a\u094d\u0930\u0926\u093e\u0928 \u0915\u0930\u0928\u0947 \u092e\u0947\u0902 \u0905\u0938\u092e\u0930\u094d\u0925 \u0939\u0948, \u0924\u094b \u0909\u0938\u0915\u0940 \u0924\u093e\u0915\u0924 \u0915\u0947 \u0926\u093e\u0935\u0947 \u0915\u093e\u092b\u0940 \u0939\u0926 \u0924\u0915 \u0916\u094b\u0916\u0932\u0947 \u0939\u0948\u0902\u0964.<\/strong> \u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u0947 \u092c\u093f\u0928\u093e \u0924\u093e\u0915\u0924 \u0938\u093f\u0930\u094d\u092b \u092c\u094d\u0930\u093e\u0902\u0921\u093f\u0902\u0917 \u0939\u0948\u0964 \u0938\u092e\u093e\u0928\u0924\u093e \u0915\u0947 \u092c\u093f\u0928\u093e \u0935\u093f\u0915\u093e\u0938 \u0905\u0938\u0902\u0924\u0941\u0932\u0928 \u0939\u0948\u0964 \u0914\u0930 \u0920\u094b\u0938 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u092a\u0930\u093f\u0923\u093e\u092e\u094b\u0902 \u0915\u0947 \u092c\u093f\u0928\u093e \u0936\u093e\u0938\u0928 \u0905\u0902\u0924\u0924\u0903 \u0905\u092a\u094d\u0930\u092d\u093e\u0935\u0940 \u0936\u093e\u0938\u0928 \u0939\u0948\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u091c\u092c \u0924\u0915 \u0928\u093f\u0930\u094d\u0923\u093e\u092f\u0915 \u0928\u0940\u0924\u093f\u0917\u0924 \u0915\u093e\u0930\u094d\u0930\u0935\u093e\u0908, \u092c\u091c\u091f \u0906\u0935\u0902\u091f\u0928 \u0914\u0930 \u0905\u0902\u0924\u0930\u094d\u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0938\u0939\u092f\u094b\u0917 \u0926\u094d\u0935\u093e\u0930\u093e \u0938\u092e\u0930\u094d\u0925\u093f\u0924 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u094b \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e \u0928\u0939\u0940\u0902 \u0926\u0940 \u091c\u093e\u0924\u0940, \u0924\u092c \u0924\u0915 \u0906\u0930\u094d\u0925\u093f\u0915 \u0938\u092b\u0932\u0924\u093e \u0915\u0940 \u0918\u094b\u0937\u0923\u093e\u090f\u0902 \u0916\u094b\u0916\u0932\u0940 \u0939\u0940 \u0930\u0939\u0947\u0902\u0917\u0940\u0964<strong>\u0915\u094d\u092f\u094b\u0902\u0915\u093f \u091c\u094b \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e \u0905\u092a\u0928\u0947 \u092c\u091a\u094d\u091a\u094b\u0902 \u0915\u0940 \u0930\u0915\u094d\u0937\u093e \u0928\u0939\u0940\u0902 \u0915\u0930 \u0938\u0915\u0924\u0940, \u0935\u0939 \u0935\u093f\u0936\u094d\u0935\u0938\u0928\u0940\u092f \u0930\u0942\u092a \u0938\u0947 \u092e\u091c\u092c\u0942\u0924 \u0939\u094b\u0928\u0947 \u0915\u093e \u0926\u093e\u0935\u093e \u0928\u0939\u0940\u0902 \u0915\u0930 \u0938\u0915\u0924\u0940\u0964.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">\u0906\u092a \u0938\u094d\u092a\u0937\u094d\u091f \u0930\u0942\u092a \u0938\u0947 \u0938\u092e\u091d \u0930\u0939\u0947 \u0939\u094b\u0902\u0917\u0947 \u0915\u093f \u0939\u092e \u0915\u093f\u0928 \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u094b\u0902, \u0926\u0947\u0936\u094b\u0902 \u0914\u0930 \u0921\u0940\u090f\u092e\u0921\u0940 \u0938\u0902\u0918\u094b\u0902 \u0915\u093e \u091c\u093f\u0915\u094d\u0930 \u0915\u0930 \u0930\u0939\u0947 \u0939\u0948\u0902\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0914\u0930 \u092a\u0922\u093c\u0947\u0902: <a href=\"https:\/\/dmdwarrior.com\/hi\/duchenne-muscular-dystrophy-treatment-cost\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0928\u093f\u092f\u0902\u0924\u094d\u0930\u0923 \u0938\u0947 \u092c\u093e\u0939\u0930 \u0915\u094d\u092f\u094b\u0902 \u0939\u0948?<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Duchenne muscular dystrophy (DMD) is no longer a condition defined solely by its biology. Today, it is equally defined by who can access treatment\u2014and who cannot. Despite major advances in gene therapy, exon-skipping drugs, and multidisciplinary care, Duchenne muscular dystrophy treatment access remains profoundly unequal across countries, healthcare systems, and socioeconomic groups. The reality is [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":7622,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[282],"tags":[229,261,232,685,262],"class_list":["post-2926","post","type-post","status-publish","format-standard","has-post-thumbnail","category-editorials","tag-dmd-associations","tag-dmd-families","tag-dmd-treatments","tag-drug-access","tag-ministry-of-health"],"_links":{"self":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/posts\/2926","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/comments?post=2926"}],"version-history":[{"count":0,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/posts\/2926\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/media\/7622"}],"wp:attachment":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/media?parent=2926"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/categories?post=2926"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/tags?post=2926"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}