{"id":21390,"date":"2025-06-23T18:30:19","date_gmt":"2025-06-23T18:30:19","guid":{"rendered":"https:\/\/lpfch.org\/?p=21390"},"modified":"2025-07-15T23:19:55","modified_gmt":"2025-07-15T23:19:55","slug":"donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease","status":"publish","type":"post","link":"https:\/\/lpfch.org\/hy\/impact-stories\/donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease\/","title":{"rendered":"\u0534\u0578\u0576\u0578\u0580\u0576\u0565\u0580\u056b \u0561\u057b\u0561\u056f\u0581\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0568 \u0561\u057c\u0561\u057b \u0567 \u0574\u0572\u0578\u0582\u0574 EB-\u056b\u055d \u0570\u0561\u0566\u057e\u0561\u0563\u0575\u0578\u0582\u057f \u0587 \u0581\u0561\u057e\u0578\u057f \u0574\u0561\u0577\u056f\u0561\u0575\u056b\u0576 \u0570\u056b\u057e\u0561\u0576\u0564\u0578\u0582\u0569\u0575\u0561\u0576 \u0576\u0578\u0580 \u0562\u0578\u0582\u056a\u0578\u0582\u0574\u0568"},"content":{"rendered":"

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\u0531\u0580\u0561\u0563 \u0561\u057c\u0561\u057b \u0563\u0576\u0561\u0576\u0584 \u0564\u0565\u057a\u056b 2017 \u0569\u057e\u0561\u056f\u0561\u0576\u0568, \u0565\u0580\u0562 \u0570\u056b\u0574\u0576\u0561\u0564\u0580\u057e\u0565\u0581 CDCM-\u0568\u055d \u0570\u0561\u0575\u057f\u0576\u0561\u0563\u0578\u0580\u056e\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580\u0568 \u056f\u056c\u056b\u0576\u056b\u056f\u0561\u056f\u0561\u0576 \u057a\u0580\u0561\u056f\u057f\u056b\u056f\u0561\u0575\u056b\u0581 \u0561\u0576\u056f\u0578\u0572\u0576\u0578\u0582 \u057e\u0580\u0561 \u0583\u0578\u056d\u0561\u0576\u0581\u0565\u056c\u0578\u0582 \u0561\u057c\u0561\u0584\u0565\u056c\u0578\u0582\u0569\u0575\u0561\u0574\u0562: CDCM \u0570\u0565\u057f\u0561\u0566\u0578\u057f\u0578\u0572 \u0539\u0561\u0576\u0563\u0568 \u0574\u056b \u0584\u0561\u0576\u056b \u057f\u0561\u0580\u056b \u0561\u0576\u0581 \u057d\u056f\u057d\u0565\u0581 \u056b\u0580 3-\u0580\u0564 \u0583\u0578\u0582\u056c\u056b \u056f\u056c\u056b\u0576\u056b\u056f\u0561\u056f\u0561\u0576 \u0583\u0578\u0580\u0571\u0561\u0580\u056f\u0578\u0582\u0574\u0568: \u0544\u0561\u0577\u056f\u056b \u057a\u0561\u057f\u057e\u0561\u057d\u057f\u0578\u0582\u0574\u0576\u0565\u0580\u0568...<\/span>CDCM-\u056b \u056f\u0578\u0572\u0574\u056b\u0581 \u0569\u0578\u0572\u0561\u0580\u056f\u057e\u0561\u056e \u0561\u057c\u0561\u057b\u056b\u0576 FDA-\u056b \u056f\u0578\u0572\u0574\u056b\u0581 \u0570\u0561\u057d\u057f\u0561\u057f\u057e\u0561\u056e \u0561\u0580\u057f\u0561\u0564\u0580\u0561\u0576\u0584\u0568, \u0578\u0580\u0568 \u0576\u0577\u0561\u0576\u0561\u057e\u0578\u0580\u0565\u0581 \u0570\u0561\u057d\u057f\u0561\u057f\u0578\u0582\u0569\u0575\u0561\u0576 \u0570\u0561\u0574\u0561\u0580 \u056f\u0561\u0580\u0587\u0578\u0580\u0561\u0563\u0578\u0582\u0575\u0576 \u0576\u057e\u0561\u0573\u0578\u0582\u0574\u0589<\/span>\u00a0<\/span><\/p>\n

\u0546\u0580\u0561\u0576\u0581 \u0570\u0561\u0575\u057f\u0576\u0561\u0563\u0578\u0580\u056e\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0568 \u056f\u0561\u0580\u0578\u0572 \u0567 \u0570\u0561\u0576\u0563\u0565\u0581\u0576\u0565\u056c \u0561\u057e\u0565\u056c\u056b \u0574\u0565\u056e \u0561\u057c\u0561\u057b\u0568\u0576\u0569\u0561\u0581\u056b: \u0532\u0561\u0581\u056b EB-\u056b\u0581, \u0562\u0578\u0582\u056a\u0578\u0582\u0574\u0568 \u056f\u0561\u0580\u0578\u0572 \u0567 \u0562\u0565\u0580\u0565\u056c \u0561\u0575\u0576\u057a\u056b\u057d\u056b \u0563\u056b\u057f\u0565\u056c\u056b\u0584\u0576\u0565\u0580, \u0578\u0580\u0578\u0576\u0584 \u0569\u0578\u0582\u0575\u056c \u056f\u057f\u0561\u0576 \u054d\u0569\u0565\u0576\u0586\u0578\u0580\u0564\u056b\u0576 \u056c\u0578\u0582\u056e\u0565\u056c \u0561\u0575\u056c \u0563\u0565\u0576\u0565\u057f\u056b\u056f\u0561\u056f\u0561\u0576 \u0570\u056b\u057e\u0561\u0576\u0564\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580, \u0578\u0580\u0578\u0576\u0581 \u0564\u0565\u057a\u0584\u0578\u0582\u0574 \u0574\u0565\u0572\u0561\u057e\u0578\u0580 \u0567 \u0574\u056b\u0561\u0575\u0576 \u0574\u0565\u056f \u0563\u0565\u0576, \u0576\u0565\u0580\u0561\u057c\u0575\u0561\u056c \u056f\u056b\u057d\u057f\u0578\u0566 \u0586\u056b\u0562\u0580\u0578\u0566\u0568, \u057d\u0580\u057f\u0561\u0576\u0578\u0569\u0561\u0575\u056b\u0576 \u0570\u056b\u057e\u0561\u0576\u0564\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580\u0568, \u0576\u0565\u0575\u0580\u0578\u0564\u0565\u0563\u0565\u0576\u0565\u0580\u0561\u057f\u056b\u057e \u0570\u056b\u057e\u0561\u0576\u0564\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580\u0568 \u0587 \u056a\u0561\u057c\u0561\u0576\u0563\u0561\u056f\u0561\u0576 \u0584\u0561\u0572\u0581\u056f\u0565\u0572\u0568:\u00a0<\/span>\u00a0<\/span><\/p>\n

\u00ab\u0537\u0532-\u056b \u0581\u0561\u0576\u056f\u0561\u0581\u0561\u056e \u0570\u0561\u057b\u0578\u0572\u0578\u0582\u0569\u0575\u0578\u0582\u0576, \u0581\u0561\u0576\u056f\u0561\u0581\u0561\u056e \u0562\u0578\u0582\u056a\u0578\u0582\u0574, \u0581\u0561\u0576\u056f\u0561\u0581\u0561\u056e \u0562\u0578\u0582\u056a\u0578\u0582\u0574 \u056f\u0562\u0561\u0581\u056b \u0564\u057c\u0576\u0565\u0580\u0568 \u0587 \u0570\u0576\u0561\u0580\u0561\u057e\u0578\u0580\u0578\u0582\u0569\u0575\u0578\u0582\u0576 \u056f\u057f\u0561 \u0562\u0578\u0582\u056a\u0565\u056c \u0561\u0575\u056c \u0562\u0561\u0580\u0564 \u0563\u0565\u0576\u0565\u057f\u056b\u056f\u0561\u056f\u0561\u0576 \u0570\u056b\u057e\u0561\u0576\u0564\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580\u00bb, - \u0561\u057d\u0578\u0582\u0574 \u0567 \u0539\u0561\u0576\u0563\u0568: \u00ab\u0537\u0532-\u0576 \u0561\u057c\u0561\u057b\u0561\u057f\u0561\u0580\u0576 \u0567 \u056c\u056b\u0576\u0565\u056c\u0578\u0582 \u0563\u0565\u0576\u0565\u057f\u056b\u056f\u0561\u056f\u0561\u0576 \u0569\u0565\u0580\u0561\u057a\u056b\u0561\u0576\u0565\u0580\u056b \u0578\u056c\u0578\u0580\u057f\u0578\u0582\u0574\u00bb:\u00a0<\/span>\u00a0<\/span><\/p>\n

\u0532\u0561\u0580\u0565\u0563\u0578\u0580\u056e\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0568 \u056f\u0561\u0580\u0587\u0578\u0580 \u0564\u0565\u0580 \u0567 \u056d\u0561\u0572\u0561\u0581\u0565\u056c \u0561\u0575\u057d \u0578\u0572\u057b \u0573\u0561\u0576\u0561\u057a\u0561\u0580\u0570\u0578\u0580\u0564\u0578\u0582\u0569\u0575\u0561\u0576 \u0568\u0576\u0569\u0561\u0581\u0584\u0578\u0582\u0574: \u0534\u0578\u0576\u0578\u0580\u0576\u0565\u0580\u056b \u0561\u057b\u0561\u056f\u0581\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0568 \u056f\u0561\u0580\u0587\u0578\u0580 \u0564\u0565\u0580 \u056d\u0561\u0572\u0561\u0581 1-\u056b\u0576 \u0583\u0578\u0582\u056c\u056b \u056f\u056c\u056b\u0576\u056b\u056f\u0561\u056f\u0561\u0576 \u0583\u0578\u0580\u0571\u0561\u0580\u056f\u0574\u0561\u0576 \u0574\u0565\u056f\u0576\u0561\u0580\u056f\u056b \u0563\u0578\u0580\u056e\u0578\u0582\u0574, \u0578\u0580\u0568 \u0581\u0578\u0582\u0575\u0581 \u057f\u057e\u0565\u0581 \u057d\u056f\u0566\u0562\u0576\u0561\u056f\u0561\u0576 \u056d\u0578\u057d\u057f\u0578\u0582\u0574\u0576\u0561\u056c\u056b\u0581 \u0561\u0580\u0564\u0575\u0578\u0582\u0576\u0584\u0576\u0565\u0580\u0568 \u0587 \u0585\u0563\u0576\u0565\u0581 \u0576\u0565\u0580\u0563\u0580\u0561\u057e\u0565\u056c \u0561\u057e\u0565\u056c\u056b \u056d\u0578\u0577\u0578\u0580 \u0576\u0565\u0580\u0564\u0580\u0578\u0572\u0576\u0565\u0580, \u0561\u0575\u0564 \u0569\u057e\u0578\u0582\u0574\u055d Abeona Therapeutics-\u0568, Epidermolysis Bullosa Medical Research Foundation-\u0568 \u0587 EB Research Partnership-\u0568: \u0531\u0575\u057d \u0561\u0566\u0564\u0561\u056f\u056b \u057e\u0580\u0561 \u0570\u056b\u0574\u0576\u057e\u0565\u056c\u0578\u057e\u055d \u0562\u0561\u0580\u0565\u0580\u0561\u0580 \u0532\u0578\u0578\u0582\u0565\u0575 \u053c\u056b\u056b \u0568\u0576\u057f\u0561\u0576\u056b\u0584\u0568 \u057e\u0565\u0580\u057b\u0565\u0580\u057d \u0576\u0577\u0561\u0576\u0561\u056f\u0561\u056c\u056b \u0576\u057e\u0565\u0580 \u056f\u0561\u057f\u0561\u0580\u0565\u0581 \u0576\u0580\u0561 \u057a\u0561\u057f\u057e\u056b\u0576...<\/span>\u0561\u057c\u0561\u057b\u0561\u0564\u0565\u0574 \u0570\u0565\u057f\u0561\u0566\u0578\u057f\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580 EB-\u056b \u0587 \u0570\u0561\u0566\u057e\u0561\u0563\u0575\u0578\u0582\u057f \u0570\u056b\u057e\u0561\u0576\u0564\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580\u056b \u057e\u0565\u0580\u0561\u0562\u0565\u0580\u0575\u0561\u056c\u0589\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

\u054d\u0561 \u0576\u0561\u0587 EB-\u056b \u0574\u0561\u057d\u056b\u0576 \u056b\u0580\u0561\u0566\u0565\u056f\u057e\u0561\u056e\u0578\u0582\u0569\u0575\u0561\u0576 \u0561\u0573\u056b \u056a\u0561\u0574\u0561\u0576\u0561\u056f \u0567, \u0578\u0580\u0568 \u0572\u0565\u056f\u0561\u057e\u0561\u0580\u0578\u0582\u0574 \u0565\u0576 \u0561\u0575\u0576\u057a\u056b\u057d\u056b \u0570\u0561\u0575\u057f\u0576\u056b \u0574\u0561\u0580\u0564\u056b\u056f, \u056b\u0576\u0579\u057a\u056b\u057d\u056b\u0576 \u0567 Pearl Jam-\u056b \u0537\u0564\u056b \u054e\u0565\u0564\u0564\u0565\u0580\u0568: \u0546\u0580\u0561 \u0576\u0578\u0580 \u057e\u0561\u057e\u0565\u0580\u0561\u0563\u0580\u0561\u056f\u0561\u0576 \u0586\u056b\u056c\u0574\u0568\u055d <\/span>\u053a\u0561\u0574\u0561\u0576\u0561\u056f\u056b \u0570\u0561\u0580\u0581<\/span><\/i><\/a>, \u0578\u0580\u0568 \u0570\u0561\u057b\u0578\u0580\u0564\u0578\u0582\u0574 \u0567 \u0576\u0580\u0561 \u0561\u057c\u0561\u057b\u056b\u0576 \u0561\u0576\u0570\u0561\u057f\u0561\u056f\u0561\u0576 \u0577\u0580\u057b\u0561\u0563\u0561\u0575\u0578\u0582\u0569\u0575\u0561\u0576\u0568, \u056b\u0576\u0579\u057a\u0565\u057d \u0576\u0561\u0587 EB-\u056b \u0587 \u0539\u0561\u0576\u0563\u056b \u0570\u0565\u057f\u0561\u0566\u0578\u057f\u0561\u056f\u0561\u0576 \u0573\u0561\u0576\u0561\u057a\u0561\u0580\u0570\u0578\u0580\u0564\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u056b\u0581 \u0561\u0566\u0564\u057e\u0561\u056e \u0574\u0561\u0580\u0564\u056f\u0561\u0576\u0581 \u057a\u0561\u057f\u0574\u0578\u0582\u0569\u0575\u0578\u0582\u0576\u0576\u0565\u0580\u056b\u0576, \u057a\u0580\u0565\u0574\u056b\u0565\u0580\u0561\u0576 \u056f\u0561\u0575\u0561\u0581\u0565\u056c \u0567 \u0561\u0575\u057d \u0561\u0574\u057d\u057e\u0561 \u057d\u056f\u0566\u0562\u056b\u0576 \u0539\u0580\u056b\u0562\u0565\u056f\u0561\u0575\u056b \u056f\u056b\u0576\u0578\u0583\u0561\u057c\u0561\u057f\u0578\u0576\u0578\u0582\u0574\u0589\u00a0<\/span>\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"

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