{"id":3334,"date":"2025-07-06T17:19:43","date_gmt":"2025-07-06T17:19:43","guid":{"rendered":"https:\/\/esaal.me\/blog\/?p=3334"},"modified":"2025-11-23T10:52:34","modified_gmt":"2025-11-23T10:52:34","slug":"rare-diseases","status":"publish","type":"post","link":"https:\/\/esaal.me\/blog\/rare-diseases\/","title":{"rendered":"\u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629"},"content":{"rendered":"\n<p>\u0627\u0644\u062c\u0633\u0645 \u0627\u0644\u0628\u0634\u0631\u064a \u0645\u0639\u0642\u062f \u0628\u0635\u0648\u0631\u0629 \u0635\u0639\u0628 \u062a\u062e\u064a\u0644\u0647\u0627\u060c \u0648\u0628\u0627\u0644\u0631\u063a\u0645 \u0645\u0646 \u0643\u0644 \u0627\u0644\u0644\u064a \u0648\u0635\u0644\u0647 \u0627\u0644\u0637\u0628 \u0648 \u0639\u0644\u0648\u0645 \u0627\u0644\u0625\u0646\u0633\u0627\u0646 \u0645\u0646 \u0627\u0643\u062a\u0634\u0627\u0641\u0627\u062a \u0648\u062a\u0637\u0648\u0631\u0627\u062a \u0641\u064a \u0637\u0631\u0642 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\ufedf\ufee0\ufbad\ufbfe\ufee3\u0648\ufe9f\ufee0\u0648\ufe91\ufbfe\u0646&nbsp;)\u0627\ufedf\ufe91\u0631\u0648\ufe97\ufbfe\u0646 \u0627\u0644\u062d\u0627\u0645\u0644 \u0644\u0644\u0623\u0643\u0633\u062c\u064a\u0646 \u062f\u0627\u062e\u0644 \u0643\u0631\u0627\u062a \u0627\u0644\u062f\u0645 \u0627\u0644\u062d\u0645\u0631\u0627\u0621&nbsp;(\u060c \ufe97\ufeb3\ufe91\u0628 \ufe97\ufeb7\u0648\u0647 \u0641\u064a \u0634\u0643\u0644 \ufe91\ufecc\u0636 \u0643\u0631\u0627\u062a \u0627\ufedf\u062f\u0645 \u0627\ufedf\ufea3\ufee3\u0631\u0627\u0621 \u0648\ufe97\ufe9f\ufecc\ufee0\ufbad\ufe8e \ufe91\ufeb7\ufedb\u0644 \u0627\u0644\u0641\u0623\u0633&nbsp;)\u06be\ufefc\u0644\u064a\u0629(&nbsp;\u0627\u0644\u062a\u0634\u0648\u0647 \u0628\u064a\u0641\u0642\u062f\u0647\u0627 \u0627\u0644\u0642\u062f\u0631\u0629 \u0639\u0644\u0649 \u0627\ufedf\ufed8\ufbfe\ufe8e\u0645 \ufe91\u0648\u0638\ufbfe\ufed4\ufe97\ufbad\ufe8e \u0627\ufedf\ufee3\ufecc\ufe97\ufe8e\u062f\u0629 \u0627\ufedf\u0631\ufe8b\ufbfe\ufeb3\ufbfe\ufe94 \u0648\u06be\ufef2 \ufea3\ufee3\u0644 \u0627\ufefb\ufedb\ufeb3\ufe9f\ufbfe\u0646 \ufedf\ufea7\ufefc\ufbfe\ufe8e \u0648\u0623\ufee7\ufeb3\ufe9f\ufe94 \u0627\ufedf\ufe9f\ufeb3\u0645 \u0627\ufedf\ufee3\ufea7\ufe97\ufee0\ufed4\ufe94\u060c \u0648\ufe91\ufe8e\ufedf\ufe97\ufe8e\ufedf\ufef2 \u064a\u062d\u0635\u0644 \ufed3\ufed8\u0631 \u062f\u0645 \ufee3\u0632\ufee3\u0646 \ufee7\ufe8e\ufe97\ufe9e \ufecb\u0646 \u0632\ufbfe\ufe8e\u062f\u0629 \ufee3\ufecc\u062f\u0644 \ufe97\ufedb\ufeb3\ufbfe\u0631 \u0643\u0631\u0627\u062a \u0627\ufedf\u062f\u0645 \u0627\ufedf\ufea3\ufee3\u0631\u0627\u0621 \u0627\ufedf\ufee3\ufeb7\u0648\u06be\ufe94.<\/p>\n\n\n\n<h1 class=\"wp-block-heading\">\u25cf&nbsp;&nbsp;&nbsp;\u0627\ufedf\ufe97\ufee0\ufbfe\u0641 \u0627\ufedf\ufedb\ufbfe\ufeb3\ufef2&nbsp;&#8211;&nbsp;Fibrosis&nbsp;Cystic&nbsp;:<\/h1>\n\n\n\n<p>\u0628\u064a\u0633\u0628\u0628 \ufe97\ufee0\u0641 \ufeb7\u062f\u064a\u062f \ufed3\ufef2 \u0627\ufedf\u0631\ufe8b\ufe97\ufbfe\u0646\u060c \u0627\ufedf\ufe9f\ufbad\ufe8e\u0632 \u0627\ufedf\ufbad\ufebf\ufee3\ufef2\u060c \u0648\u0628\u0627\u0642\u064a \u0627\ufef7\ufecb\ufebf\ufe8e\u0621 \u0627\ufef7\ufea7\u0631\u0649 \ufed3\ufef2 \u0627\ufedf\ufe9f\ufeb3\u0645. \ufbfe\u0624\ufe9b\u0631 \u0627\ufedf\ufe97\u0644\u064a\u0641 \u0627\u0644\u0643\u064a\u0633\u064a \u0639\u0644\u0649 \u0627\u0644\u062e\u0644\u0627\u064a\u0627 \u0627\u0644\u0644\u064a \u0628\u062a\u0646\u062a\u062c \u0627\u0644\u0645\u062e\u0627\u0637 \u0648\u0627\u0644\u0639\u0631\u0642 \u0648\u0627\u0644\u0639\u0635\u0627\u0631\u0629 \u0627\u0644\u0647\u0636\u0645\u064a\u0629.<\/p>\n\n\n\n<p>\u06be\u0648 \u0627\ufebf\u0637\u0631\u0627\u0628 \u0648\u0631\u0627\ufe9b\ufef2<\/p>\n\n\n\n<h1 class=\"wp-block-heading\">: (Duchenne Muscular Dystrophy (DMD &#8211;&nbsp;\u062f\u0648\ufeb7\ufbfe\u0646&nbsp;\u0627\ufedf\ufecc\ufebf\ufefc\u062a&nbsp;\ufebf\ufee3\u0648\u0631&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;\u25cf<\/h1>\n\n\n\n<p>\ufbfe\ufebb\ufbfe\u0628&nbsp;3500\\1&nbsp;,&nbsp;\u0623\u0631\ufe91\ufecc\ufe94 \u0622\ufefb\u0641 \ufee3\ufee7\ufbad\u0645 \ufee3\u0646 \u0627\ufedf\u0630\ufedb\u0648\u0631 \u0648\u0628\u064a\u062a\u0645 \ufe97\ufeb7\ufea7\ufbfe\ufebb\ufbab\u0645 \ufed3\ufef2 \ufee3\u0631\ufea3\ufee0\ufe94 \u0627\ufedf\u0637\ufed4\u0648\ufedf\ufe94 \u0627\ufedf\ufee3\ufe91\ufedb\u0631\u0629. \u064a\u062a\u0633\u0628\u0628 \u0636\u0645\u0648\u0631 \u0627\u0644\u0639\u0636\u0644\u0627\u062a \u062f\u0648\u0634\u064a\u0646 \u0641\u064a \u0625\ufedf\ufef0 \ufecb\u062f\u0645 \u0627\ufedf\ufed8\u062f\u0631\u0629 \ufecb\ufee0\ufef0 \u0627\ufedf\ufee3\ufeb7\ufef2 \u0628\u062f\u0627\u064a\u0629 \u0645\u0646 \u0627\u0644\u0639\u0634\u0631\u064a\u0646\u0627\u062a &#8211; \ufed3\ufef2 \ufecf\ufe8e\ufedf\ufe91\ufbfe\ufe94 \u0627\ufedf\ufea3\ufe8e\ufefb\u062a &#8211; \u0648\u0625\ufedf\ufef0 \u0627\ufedf\u0648\ufed3\ufe8e\u0629 \ufed3\ufef2 \u0627\ufedf\u062b\u0644\u0627\u062b\u064a\u0646\u0627\u062a<\/p>\n\n\n\n<h1 class=\"wp-block-heading\">\u25cf&nbsp;&nbsp;&nbsp;\ufeb3\ufbfe\u0648\ufedf\ufe94 \u0627\ufedf\u062f\u0645&nbsp;)\u0627\ufedf\ufbad\ufbfe\ufee3\u0648\ufed3\ufbfe\ufee0\ufbfe\ufe8e(&nbsp;&#8211;&nbsp;Hemophilia&nbsp;:<\/h1>\n\n\n\n<p>\u0648\u06be\u0648 \u0645\u0646 \u0623\ufee3\u0631\u0627\u0636 \u0627\ufedf\u062f\u0645 \u0627\ufedf\u0648\u0631\u0627\ufe9b\ufbfe\ufe94 \u0627\u0644\u0644\u064a \u0628\u062a\u062d\u0635\u0644 \u0628\u0633\u0628\u0628 \ufee7\ufed8\u0635 \u0623\ufea3\u062f \ufecb\u0648\u0627\ufee3\u0644 \u0627\ufedf\ufe97\ufe9f\ufee0\u0637 \ufed3\ufef2 \u0627\ufedf\u062f\u0645 \u0648\u0628\u0627\u0644\u062a\u0627\u0644\u064a\u060c \u062f\u0645 \u0627\u0644\u0634\u062e\u0635 \u0627\u0644\u0645\u0635\u0627\u0628 \u0628\u0645\u0631\u0636 \u0627\u0644\u0647\u064a\u0645\u0648\u0641\u064a\u0644\u064a\u0627 \u0644\u0627 \u064a\u062a\u062c\u0644\u0637 \u0628\u0634\u0643\u0644 \u0637\u0628\u064a\u0639\u064a\u061b \u0648\u0627\u0644\u0644\u064a \u0628\u0627\u0644\u062a\u0627\u0644\u064a \u0628\u064a\u062a\u0633\u0628\u0628 \u0641\u064a<\/p>\n\n\n\n<p>\u0627\u0644\u0646\u0632\u064a\u0641 \ufedf\ufee3\u062f\u0629 \u0623\u0637\u0648\u0644 \u0648\u0644\u0644\u0623\u0633\u0641 \u0628\u0633\u0647\u0648\u0644\u0629 \u0627\ufebb\ufed0\u0631 \ufe9f\u0631\u062d \u0623\u0648 \u0625\ufebb\ufe8e\ufe91\ufe94 \u0628\u062a\u0634\u0643\u0644 \ufea7\u0637\u0631 \u0643\u0628\u064a\u0631<\/p>\n\n\n\n<p>\u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0633\u0627\u0628\u0642 \u0630\u0643\u0631\u0647\u0627 \u062a\u0639\u062a\u0628\u0631 \u0645\u0646 \u0623\u0643\u062a\u0631 \u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629 \u0645\u0646 \u062d\u064a\u062b \u0646\u0633\u0628\u0629 \u0627\u0644\u0623\u0641\u0631\u0627\u062f \u0627\u0644\u0645\u0635\u0627\u0628\u0629 \u0639\u0644\u0649 \u0645\u0633\u062a\u0648\u0649 \u0627\u0644\u0639\u0627\u0644\u0645\u060c \u0628\u0627\u0644\u0625\u0636\u0627\u0641\u0629 \u0644\u0643\u062a\u064a\u0631 \ufee3\u0646 \u0627\ufef7\ufee3\u0631\u0627\u0636 \u0627\ufedf\ufee7\ufe8e\u062f\u0631\u0629 \u0627\u0644\u0644\u064a \u0628\u062a\u0635\u064a\u0628 \ufee7\ufeb3\ufe91\ufe94 \u0643\u0628\u064a\u0631\u0629 \ufecb\ufee0\ufef0 \ufee3\ufeb3\ufe97\u0648\u0649 \u0627\ufedf\ufecc\ufe8e\ufedf\u0645 \u0632\u064a \u0627\ufef7\ufee3\u0631\u0627\u0636 \u0627\ufedf\u0644\u064a \u0628\u062a\u0638\u0647\u0631 \u0623\ufecb\u0631\u0627\ufebf\ufbad\ufe8e \ufe91\ufecc\u062f \u0627\ufef9\ufebb\ufe8e\ufe91\ufe94 \ufe91\ufecc\u062f\u0648\u0649 \ufed3\ufbfe\u0631\u0648\ufeb3\ufbfe\ufe94 \u0623\u0648 \ufe91\ufedb\ufe97\ufbfe\u0631\ufbfe\ufe94\u060c \u0639\u0644\u0634 \u0633\u0628\u064a\u0644 \u0627\u0644\u0645\u062b\u0627\u0644:<\/p>\n\n\n\n<p>\u00b7&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;\ufee3\ufe97\ufefc\u0632\ufee3\ufe94 \ufecf\ufbfe\ufefc\u0646 \ufe91\ufe8e\u0631\ufbfe\ufbab&nbsp;&#8211;&nbsp;(GBS&nbsp;syndrome&nbsp;(Guillain-Barr\u00e9&nbsp;,&nbsp;\u0628\u0639\u062a\u0628\u0631 \u062d\u0627\u0644\u0629 \u0637\u0628\u064a\u0629 \u0637\u0627\u0631\u0626\u0629 \u0648\u06be\u0648 \u0627\ufebf\u0637\u0631\u0627\u0628 \ufee7\ufe8e\u062f\u0631 \u0628\u064a\u0647\u0627\u062c\u0645 \u0641\u064a\u0647 \u0627\ufedf\ufe9f\ufbad\ufe8e\u0632 \u0627\ufedf\ufee3\ufee7\ufe8e\ufecb\ufef2 \ufedf\ufee0\ufe9f\ufeb3\u0645 \u0627\ufedf\ufea7\ufefc\ufbfe\ufe8e \u0627\ufedf\ufecc\ufebb\ufe91\ufbfe\ufe94 \ufe91\ufecc\u062f \u0625\ufebb\ufe8e\ufe91\ufe94 \u0627\ufedf\u0634\u062e\u0635 \ufe91\ufecc\u062f\u0648\u0649 \ufe91\ufedb\ufe97\ufbfe\u0631\ufbfe\ufe94 \u0623\u0648 \ufed3\ufbfe\u0631\u0648\ufeb3\ufbfe\ufe94 \u0648\ufe91\u062f\u0648\u0646 \ufeb3\ufe91\u0628 \u0648\u0627\ufebf\ufea2.&nbsp;\u0627\u0644\u0623\u0639\u0631\u0627\u0636 \u0627\u0644\u0623\u0648\u0644\u0649 \u0644\u0645\u062a\u0644\u0627\u0632\u0645\u0629 \u063a\u064a\u0644\u0627\u0646 \u0628\u0627\u0631\u064a\u0647 \u06be\ufef2 \u0627\ufedf\ufeb7\ufecc\u0648\u0631 \ufe91\ufebf\ufecc\u0641 \u0648\u0648\ufea7\u0632 \u0641\u064a \u0627\u0644\u0627\u064a\u062f\u064a\u0645 \u0648\u0627\u0644\u0631\u062c\u0644\u064a\u0646 \u0648\u0628\u062a\u0646\u062a\u0634\u0631 \u0627\u0644\u0623\u0639\u0631\u0627\u0636 \u0628\u0633\u0631\u0639\u0629 \u0644\u062d\u062f \u0645\u0627 \u064a\u0635\u0627\u0628 \u0627\u0644\u062c\u0633\u0645 \u0628\u0627\u0644\u0643\u0627\u0645\u0644 \u0628\u0627\u0644\u0634\u0644\u0644.<\/p>\n\n\n\n<p>\u00b7&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;\u0627\ufedf\ufe97\u0631\ufee7\ufea2 \u0627\ufedf\ufea3\u0631\ufedb\ufef2 \u0627\u0644\u0648\u0631\u0627\u062b\u064a&nbsp;&#8211;&nbsp;ataxia&nbsp;Friedreich\u2019s&nbsp;,&nbsp;\u0628\u064a\u062d\u0635\u0644 \u0628\u0633\u0628\u0628 \u0627\ufebf\u0637\u0631\u0627\u0628 \ufe9f\ufbfe\ufee7\ufef2 \ufee3\ufe97\ufee7\ufea3\ufef2 \ufe91\ufeb3\ufe91\u0628 \u0637\ufed4\u0631\u0629 \ufed3\ufef2<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\ufe9f\ufbfe\u0646 \ufe91\ufe8e\ufedf\ufedb\u0631\u0648\ufee3\u0648\ufeb3\u0648\u0645 \u0631\ufed7\u0645&nbsp;9&nbsp;.&nbsp;\u0648\u06be\u0648 \ufee3\u0631\u0636 \u0648\u0631\u0627\ufe9b\ufef2 \u0648\u0628\u064a\u0645\u062b\u0644 \u062d\u0648\u0627\u0644\u064a&nbsp;%50&nbsp;\ufee3\u0646 \ufea3\ufe8e\ufefb\u062a \u0627\ufedf\ufe97\u0631\ufee7\ufea2 \u0627\ufedf\u0648\u0631\u0627\ufe9b\ufef2&nbsp;.&nbsp;\ufbfe\u0638\ufbad\u0631 \ufecb\ufee0\ufef0 \u0627\ufedf\ufee3\u0631\ufbfe\u0636 \u0623\ufecb\u0631\u0627\u0636 \u0632\u064a: \ufe97\u0631\ufee7\ufea2 \u0627\ufef7\u0637\u0631\u0627\u0641 \ufecb\ufee7\u062f \u0627\u0644\u0645\u0634\u064a.<\/h3>\n\n\n\n<p>\u0623\u062e\u064a\u0631\u064b\u0627\u060c \u0641\u064a \u0623\u0646\u0648\u0627\u0639 \u0623\u0643\u062a\u0631 \u0644\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629 \u0648\u0627\u0644\u0644\u064a \u0628\u062a\u0639\u0628\u0631 \u0639\u0646 \u0646\u0641\u0633\u0647\u0627 \u062e\u0644\u0627\u0644 \u0627\u0644\u062c\u064a\u0627\u0629 \u0623\u0648 \u0645\u0646 \u0648\u0642\u062a \u0627\u0644\u0648\u0644\u0627\u062f\u0629 \u0632\u064a:<\/p>\n\n\n\n<p>\u0636\u0645\u0648\u0631 \u0627\u0644\u0646\u062e\u0627\u0639 \u0627\u0644\u0634\u0648\u0643\u064a \u2013&nbsp;Spinal Muscular Atrophy&nbsp;\u0648\u0627\u0644\u0644\u064a \u0628\u062a\u0638\u0647\u0631 \u0623\u0639\u0631\u0627\u0636\u0647 \u0645\u0646 \u0648\u0642\u062a \u0627\u0644\u0648\u0644\u0627\u062f\u0629\u060c<\/p>\n\n\n\n<p>\u00a0\u0623\u0648 \u0645\u0627 \u064a\u0633\u0645\u0649 \u0628\u0627\u0644\u062a\u0628\u0648\u0644 \u0627\u0644\u0623\u0633\u0648\u062f \u2013 \u0627\u0644\u0643\u0627\u0628\u062a\u0648\u0646\u064a\u0648\u0631\u064a\u0627 \u2013\u00a0Alkatonuria\u00a0\u00a0\u0648\u0627\u0644\u0644\u064a 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