{"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":"http:\/\/lpfch.org\/ko\/impact-stories\/donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease\/","title":{"rendered":"\uae30\ubd80\uc790 \uc9c0\uc6d0\uc73c\ub85c \ud76c\uadc0\ud558\uace0 \uace0\ud1b5\uc2a4\ub7ec\uc6b4 \ud53c\ubd80 \uc9c8\ud658\uc778 EB\uc5d0 \ub300\ud55c \uc0c8\ub85c\uc6b4 \uce58\ub8cc\ubc95 \uac1c\ubc1c"},"content":{"rendered":"<p><span data-contrast=\"none\">\uac00\uc7a5 \uc2ec\uac01\ud55c \ud53c\ubd80 \uc9c8\ud658 \uc911 \ud558\ub098\ub97c \uc553\uace0 \uc788\ub294 \uac00\uc871\ub4e4\uc5d0\uac8c \uc774\uc81c \ub354 \ud070 \ud76c\ub9dd\uc774 \uc0dd\uacbc\uc2b5\ub2c8\ub2e4. \ucd5c\uadfc 3\uc0c1 \uc784\uc0c1 \uc2dc\ud5d8\uc5d0\uc11c \uc720\uc804\uc790 \uce58\ub8cc \ud53c\ubd80 \uc774\uc2dd\uc774 \uc218\ud3ec\uc131 \ud45c\ud53c\ubc15\ub9ac\uc99d(EB) \ud658\uc790\uc5d0\uac8c \uc720\uc758\ubbf8\ud55c \ud6a8\uacfc\ub97c \ubcf4\uc600\ub2e4\ub294 \uacb0\uacfc\uac00 \ub098\uc654\uc2b5\ub2c8\ub2e4. \uadf8 \uacb0\uacfc\ub294 \ub2e4\uc74c\uacfc \uac19\uc2b5\ub2c8\ub2e4. <\/span><a href=\"https:\/\/med.stanford.edu\/news\/all-news\/2025\/06\/epidermolysis-bullosa.html\"><span data-contrast=\"none\">\uc5d0 \uac8c\uc2dc\ub428 <\/span><i><span data-contrast=\"none\">\ub79c\uc2ef<\/span><\/i><\/a><span data-contrast=\"none\">, \uc2a4\ud0e0\ud3ec\ub4dc \uc758\uacfc\ub300\ud559 \uc5f0\uad6c\uc790\ub4e4\uc774 \uc0c8\ub85c\uc6b4 \uce58\ub8cc\ubc95\uc744 \uac1c\ubc1c\ud558\ub294 \ub370 \uc911\uc694\ud55c \uc5ed\ud560\uc744 \ud588\ub2e4\ub294 \uac83\uc744 \ubcf4\uc5ec\uc90d\ub2c8\ub2e4.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\ub300\uc911\uc758 \uc778\uc2dd \uc81c\uace0\uc640 \uae30\ubd80\uc790\ub4e4\uc758 \uc544\ub08c\uc5c6\ub294 \uc9c0\uc6d0 \ub610\ud55c \uc774\ub7ec\ud55c \ud68d\uae30\uc801\uc778 \uc9c4\uc804\uc744 \uc774\ub8e8\ub294 \ub370 \uc911\uc694\ud55c \uc5ed\ud560\uc744 \ud588\uc2b5\ub2c8\ub2e4. \ucd5c\uc804\uc120\uc5d0\uc11c <\/span><span data-contrast=\"none\">\uc2a4\ud0e0\ud37c\ub4dc \ub8e8\uc2e4 \ud328\ucee4\ub4dc \uc5b4\ub9b0\uc774 \ubcd1\uc6d0\uc5d0\uc11c EB(\ubc1c\uae30\ubd80\uc804) \uc18c\uc544\ub97c \uce58\ub8cc\ud558\ub294 \ud53c\ubd80\uacfc \uad50\uc218\uc778 \uc9c4 Y. \ud0d5(Jean Y. Tang, MD, PhD)\uc785\ub2c8\ub2e4. \uc774 \ud53c\ubd80 \uc774\uc2dd\uc740 4\uc6d4 29\uc77c \ubbf8\uad6d \uc2dd\ud488\uc758\uc57d\uad6d(FDA)\uc758 \uc2b9\uc778\uc744 \ubc1b\uc558\uc2b5\ub2c8\ub2e4. \uc774 \ud53c\ubd80 \uc774\uc2dd\uc740 \ud328\ucee4\ub4dc \uc5b4\ub9b0\uc774 \ubcd1\uc6d0\uc744 \ud3ec\ud568\ud55c \uc804\uad6d 5\uac1c \ubcd1\uc6d0\uc5d0\uc11c \uc0ac\uc6a9\ub420 \uc608\uc815\uc774\uba70, \ud53c\ubd80\uacfc \uad50\uc218\uc778 \uc870\uc774\uc2a4 \ud161(Joyce Teng, MD, PhD)\uc740 \uc678\uacfc \uc804\ubb38\uc758 \ubc0f \ub9c8\ucde8\uacfc \uc804\ubb38\uc758\uc778 H. \ud53c\ud130 \ub85c\ub80c\uce20(H. Peter Lorenz, MD), \ub85c\ud788\ud2b8 \ucf54\uc2ac\ub77c(Rohit Khosla, MD, FACS), \ub8e8\uc774\uc2a4 \ud6c4\ub77c\uce74\uc640(Louise Furakawa)\uc640 \ud611\ub825\ud558\uc5ec \uc0ac\uc6a9\ud560 \uc608\uc815\uc785\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Tang\uc740 &quot;\uc790\uc120 \ud65c\ub3d9\uc740 EB \uce58\ub8cc\ub97c \uc704\ud55c \uc0c8\ub85c\uc6b4 \uce58\ub8cc\ubc95\uc744 \ud5a5\ud55c Stanford\uc758 \uc5f0\uad6c\ub97c \ucd94\uc9c4\ud558\ub294 \ub370 \uc911\uc694\ud55c \uc5ed\ud560\uc744 \ud588\uc2b5\ub2c8\ub2e4.&quot;\ub77c\uace0 \ub9d0\ud588\uc2b5\ub2c8\ub2e4.<\/span><span data-contrast=\"none\"> \uc5f0\uad6c\uc758 \uacf5\ub3d9 \uc800\uc790<\/span><span data-contrast=\"none\">10\ub144 \uc804 \uc81c\uac00 \uc774 \ubd84\uc57c \uc5f0\uad6c\uc790\ub85c \ucc98\uc74c \uc2dc\uc791\ud55c \uc774\ud6c4, \uc6b0\ub9ac\ub294 \uc774 \uc9c8\ubcd1\uc5d0 \ub300\ud574 \uc5c4\uccad\ub098\uac8c \ub9ce\uc740 \uac83\uc744 \ubc30\uc6e0\uace0, \uc774\uc81c FDA \uc2b9\uc778\uc744 \ubc1b\uc740 \ud765\ubbf8\ub85c\uc6b4 \uc0c8\ub85c\uc6b4 \uce58\ub8cc\ubc95\uc744 \uac16\uac8c \ub418\uc5c8\uc2b5\ub2c8\ub2e4. \uc6b0\ub9ac\ub294 \uce58\ub8cc\ubc95 \uac1c\ubc1c\uc744 \uac00\uc18d\ud654\ud558\uace0 \uad81\uadf9\uc801\uc73c\ub85c\ub294 \uce58\ub8cc\ubc95\uc744 \ucc3e\uae30 \uc704\ud574 \uacc4\uc18d\ud574\uc11c \ub178\ub825\ud560 \uac83\uc785\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<section class=\"component component-cta impact-story-cta full-width-cta  no-image scheme-red\" >\n  <div class=\"module-container\">\n    <div class=\"component-cta-container\">\n      <div class=\"component-cta-wrapper\">\n        <h2 class=\"component-cta-title\">\n          &quot;\uae30\ubd80\uc790\ub4e4\uc758 \uc9c0\uc6d0\uc774 \ud070 \ub3c4\uc6c0\uc774 \ub418\uc5c8\uc2b5\ub2c8\ub2e4...&quot;\n        <\/h2>\n\n                  <p class=\"component-cta-description\">\n            \uc6b0\ub9ac \uae30\ubd80\uc790 \ucee4\ubba4\ub2c8\ud2f0\uac00 \uc774\ub7ec\ud55c \ud68d\uae30\uc801\uc778 \ubc1c\uc804\uc744 \uac00\ub2a5\ud558\uac8c \ud569\ub2c8\ub2e4. \uc544\ub3d9 \uac74\uac15\uc758 \uc0c8\ub85c\uc6b4 \ud601\uc2e0\uc744 \uc8fc\ub3c4\ud574 \ub098\uac00\uc138\uc694.\n          <\/p>\n        \n        <div class=\"component-cta-buttons\">\n                                    <a href=\"https:\/\/lpfch.org\/donate\/\"\n       class=\"component-cta-button btn btn-white\"      title=\"\uc9c0\uae08 \uae30\ubd80\ud558\uc138\uc694\" >\n      \uc9c0\uae08 \uae30\ubd80\ud558\uc138\uc694\n  \n  <\/a>\n                        \n                              <\/div>\n      <\/div>\n\n          <\/div>\n  <\/div>\n<\/section>\n\n<p><span data-contrast=\"none\">\ubbf8\uad6d\uc5d0\uc11c\ub294 \ucd5c\ub300 5,000\uba85\uc774 EB(\ubc1c\uc9c4\uc131 \ud53c\ubd80\uc5fc)\ub97c \uc553\uace0 \uc788\uc73c\uba70, \uc774 \uc9c8\ud658\uc73c\ub85c \uc778\ud55c \uae30\ub300 \uc218\uba85 \ub2e8\ucd95\uc73c\ub85c \uc778\ud574 \ub300\ubd80\ubd84 \uc5b4\ub9b0\uc774\uc785\ub2c8\ub2e4. \uc774 \uc9c8\ud658\uc740 \ud53c\ubd80\uc758 \uc0c1\uce35\uacfc \ud558\uce35\uc744 \uace0\uc815\ud558\ub294 \ud544\uc218 \ub2e8\ubc31\uc9c8\uc778 \ucf5c\ub77c\uac90 VII \uc720\uc804\uc790\uc758 \uacb0\ud568\uc73c\ub85c \uc778\ud574 \ubc1c\uc0dd\ud569\ub2c8\ub2e4. \uc911\uc99d EB \ud658\uc790\ub294 \ud53c\ubd80\uac00 \ub9e4\uc6b0 \ubbfc\uac10\ud558\uc5ec \uac00\ubcbc\uc6b4 \uc811\ucd09\uc5d0\ub3c4 \ubb3c\uc9d1\uc774 \uc0dd\uae30\uace0, \uacb0\uad6d\uc5d0\ub294 \ud06c\uace0 \uc5f4\ub9b0 \uc0c1\ucc98\uac00 \uc0dd\uaca8 \uadf9\uc2ec\ud55c \ud1b5\uc99d\uc744 \uc720\ubc1c\ud560 \uc218 \uc788\uc2b5\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\uc568\ub77c\ubc30\ub9c8\uc8fc \ubc84\ubc0d\ud584\uc5d0 \uc0ac\ub294 20\uc138 \uc0ec\ub7ff \ube0c\ub77c\uc6b4\uc740 2021\ub144 3\uc0c1 \uc784\uc0c1\uc2dc\ud5d8\uc5d0 \ucc38\uc5ec\ud558\uae30 \uc804\ubcf4\ub2e4 EB\ub85c \uc778\ud55c \ud1b5\uc99d\uc774 \ud6e8\uc52c \uc904\uc5c8\uc2b5\ub2c8\ub2e4. \uc784\uc0c1\uc2dc\ud5d8\uc5d0\uc11c \uadf8\ub140\uac00 \ubc1b\uc740 \uc720\uc804\uc790 \ubcc0\ud615 \uc774\uc2dd\ud3b8\uc740 \uc5ec\ub7ec \ub9cc\uc131 \uc0c1\ucc98\uc758 \uc2ec\uac01\uc131\uc744 \ud06c\uac8c \uc644\ud654\ud588\uc2b5\ub2c8\ub2e4. \uadf8\ub140\ub294 \uc2ec\uc9c0\uc5b4 \uc790\uc2e0\uc774 \uc88b\uc544\ud558\ub294 \uc57d\uad6d \ubcf4\uc870\uc6d0\uc774\ub77c\ub294 \uc9c1\uc5c5\ub3c4 \uc720\uc9c0\ud560 \uc218 \uc788\uac8c \ub418\uc5c8\uc2b5\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">&quot;\uc815\ub9d0 \uc778\uc0dd\uc774 \ubc14\ub00c\uc5c8\uc5b4\uc694.&quot; \ube0c\ub77c\uc6b4\uc740 \ub9d0\ud55c\ub2e4. &quot;\uae30\ubd84\uc774 \ud6e8\uc52c \uc88b\uc544\uc84c\uc5b4\uc694.&quot;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\ube0c\ub77c\uc6b4\uc740 \uc5f0\uad6c\uc5d0 \ucc38\uc5ec\ud55c 11\uba85 \uc911 \ud55c \uba85\uc73c\ub85c, \uc774\ub4e4 \uc911 \ub300\ubd80\ubd84\uc740 \ud53c\ubd80\uc758 \uc5ec\ub7ec \ubd80\uc704\uc5d0 \uc720\uc804\uc790 \uce58\ub8cc \uc2dc\ud2b8\ub97c \ubc1b\uc558\uc2b5\ub2c8\ub2e4.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\uc0c8\ub85c\uc6b4 \uce58\ub8cc\ubc95\uc740 \ud658\uc790\uc758 \uc0c1\ucc98\uac00 \uc5c6\ub294 \ud53c\ubd80\uc5d0\uc11c \uc18c\ub7c9\uc758 \uc0dd\uac80\uc744 \ucc44\ucde8\ud558\uace0, \ubc14\uc774\ub7ec\uc2a4\ub97c \uc774\uc6a9\ud558\uc5ec \uc2e4\ud5d8\uc2e4\uc5d0\uc11c \ub3cc\uc5f0\ubcc0\uc774 \uc720\uc804\uc790\uc758 \uac74\uac15\ud55c \uc0ac\ubcf8\uc744 \ud658\uc790\uc758 \ud53c\ubd80 \uc138\ud3ec\uc5d0 \uc804\ub2ec\ud558\ub294 \uac83\uc785\ub2c8\ub2e4. \uc720\uc804\uc790 \uc870\uc791\ub41c \uc138\ud3ec\ub294 \uc2e0\uc6a9\uce74\ub4dc \ud06c\uae30\uc758 \ud53c\ubd80 \uc2dc\ud2b8\ub85c \ubc30\uc591\ub429\ub2c8\ub2e4. \uc774\ub807\uac8c \ucc98\ub9ac\ub41c \ud53c\ubd80 \uc138\ud3ec \uc2dc\ud2b8\ub294 \uc218\uc220\uc801\uc73c\ub85c \ud658\uc790\uc758 \uc544\ubb3c\uc9c0 \uc54a\ub294 \uc0c1\ucc98\uc5d0 \uc774\uc2dd\ub429\ub2c8\ub2e4. \uc774 \uc138\ud3ec \uce58\ub8cc\ubc95\uc740 7\ud615 \ucf5c\ub77c\uac90\uc744 \uc7a5\uae30\uc801\uc73c\ub85c \uacf5\uae09\ud558\uc5ec \ud658\uc790\uc758 \ub9cc\uc131\uc801\uc774\uace0 \uace0\ud1b5\uc2a4\ub7ec\uc6b4 \uc0c1\ucc98\ub97c \uce58\uc720\ud569\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u201cEB\ub85c \uace0\ud1b5\ubc1b\ub294 \ud658\uc790\ub4e4\uc744 \ubcf4\uace0 \uadf8 \uc9c8\ubcd1\uc774 \uc5bc\ub9c8\ub098 \uc2ec\uac01\ud55c\uc9c0 \uc54c\uac8c \ub418\uba74 \uadf8\ub4e4\uc744 \ub3d5\uae30 \uc704\ud574 \ucd5c\uc120\uc744 \ub2e4\ud558\uac8c \ub420 \uac83\uc785\ub2c8\ub2e4.\u201d\ub77c\uace0 Center for Curative and Definitive Medicine(CDCM)\uc758 \uacf5\ub3d9 \uc774\uc0ac\uc774\uc790 \uacf5\ub3d9 \ucc3d\ub9bd\uc790\uc778 Anthony Oro \ubc15\uc0ac(MD, PhD)\uac00 \ub9d0\ud588\uc2b5\ub2c8\ub2e4. <\/span><i><span data-contrast=\"none\">\uc720\uc9c4\uacfc \uae00\ub85c\ub9ac\uc544 \ubc14\uc6b0\uc5b4 \ud53c\ubd80\uacfc \uad50\uc218<\/span><\/i><span data-contrast=\"none\">&quot;\uc774\uc81c \uc6b0\ub9ac\ub294 \uc190\uc0c1\ub41c \ud53c\ubd80\ub97c \uc601\uad6c\uc801\uc73c\ub85c \ubcf5\uad6c\ud560 \uc218 \uc788\ub294 \uc194\ub8e8\uc158\uc744 \uac16\uac8c \ub410\uc2b5\ub2c8\ub2e4.&quot;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\ud558\ub8fb\ubc24 \uc0ac\uc774\uc5d0 \uc774\ub8e8\uc5b4\uc9c4 \uc77c\uc740 \uc544\ub2d9\ub2c8\ub2e4. \ud604\uc7ac \ud53c\ubd80\uacfc \uba85\uc608\uad50\uc218\uc778 \uc9c4 \ubc14\uc6b0\uc5b4(Gene Bauer) \ubc15\uc0ac\ub294 20\uc5ec \ub144 \uc804 \uc2a4\ud0e0\ud37c\ub4dc \ub300\ud559\uad50\uc5d0 EB \uc5f0\uad6c\ub97c \ub3c4\uc785\ud558\uc5ec \uc5f0\uad6c\ud300\uc744 \uad6c\uc131\ud588\uace0, \uadf8 \uacb0\uacfc \uc774 \ud68d\uae30\uc801\uc778 \uc131\uacfc\uac00 \ub3c4\ucd9c\ub418\uc5c8\uc2b5\ub2c8\ub2e4. \uc774 \ud53c\ubd80 \uc774\uc2dd\ud3b8\uc740 \ud604\uc7ac \ud53c\ubd80\uacfc \uba85\uc608\uad50\uc218\uc778 \uc54c\ud504\ub808\ub4dc \ub808\uc778(Alfred Lane) \ubc15\uc0ac\uc640 \ud53c\ubd80\uacfc \ubd80\uad50\uc218\uc778 \ud53c\ud130 \ub9c8\ub9b0\ucf54\ube44\uce58(Peter Marinkovich) \ubc15\uc0ac\uac00 \uc8fc\ub3c4\ud55c 1\uc0c1 \uc784\uc0c1 \uc2dc\ud5d8\uc5d0\uc11c \ucc98\uc74c \uc2dc\ud5d8\ub418\uc5c8\uc2b5\ub2c8\ub2e4. \uc138\ud3ec\uc5d0\uc11c \uc2dc\uc791\ud558\uc5ec \uc950, \uadf8\ub9ac\uace0 \ud658\uc790\uc5d0\uac8c\uae4c\uc9c0 \uc774 \uce58\ub8cc\ubc95\uc744 \uac1c\ubc1c\ud558\ub294 \ub370 \ud5cc\uc2e0\ud55c \uc120\uc784 \uc5f0\uad6c\uc6d0 \uc8fc\ub78d \uc2dc\ud504\ub77c\uc288\ube4c\ub9ac(Zurab Siprashvili)\uc640 \ud53c\ubd80\uacfc \ud559\uacfc\uc7a5 \ud3f4 \uce74\ubc14\ub9ac(Paul Khavari)\uc758 \ucd94\uac00 \uc9c0\uc6d0\ub3c4 \uc788\uc5c8\uc2b5\ub2c8\ub2e4.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">2017\ub144\uc73c\ub85c \uc2dc\uac04\uc744 \ub3cc\ub824\ubcf4\uba74, \uc5f0\uad6c \uacb0\uacfc\ub97c \uc784\uc0c1\uc73c\ub85c \uc62e\uae30\uaca0\ub2e4\ub294 \uc0ac\uba85\uc744 \ud488\uace0 CDCM\uc774 \uc124\ub9bd\ub418\uc5c8\uc2b5\ub2c8\ub2e4. CDCM \uc5f0\uad6c\uc6d0\uc778 \ud0d5\uc740 \uba87 \ub144 \ud6c4 3\uc0c1 \uc784\uc0c1\uc2dc\ud5d8\uc744 \uc2dc\uc791\ud588\uc2b5\ub2c8\ub2e4. \ud53c\ubd80 \uc774\uc2dd\uc740<\/span><span data-contrast=\"auto\">CDCM\uc5d0\uc11c \ub098\uc628 \ucd5c\ucd08\uc758 FDA \uc2b9\uc778 \uc81c\ud488\uc73c\ub85c, \uc774 \uae30\uad00\uc758 \uc911\uc694\ud55c \uc774\uc815\ud45c\ub97c \uc138\uc6e0\uc2b5\ub2c8\ub2e4.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\uc774\ubc88 \ubc1c\uacac\uc740 \ub354 \ud070 \ub3cc\ud30c\uad6c\ub85c \uc774\uc5b4\uc9c8 \uc218 \uc788\uc2b5\ub2c8\ub2e4. EB \uc678\uc5d0\ub3c4, \uc774 \uce58\ub8cc\ubc95\uc740 \uc2a4\ud0e0\ud37c\ub4dc\uac00 \ub0ad\ud3ec\uc131 \uc12c\uc720\uc99d, \uc2ec\ud608\uad00 \uc9c8\ud658, \uc2e0\uacbd \ud1f4\ud589\uc131 \uc9c8\ud658, \uc720\uc804\uc131 \uc554 \ub4f1 \ub2e8\uc77c \uc720\uc804\uc790\uc5d0 \uacb0\ud568\uc774 \uc788\ub294 \ub2e4\ub978 \uc720\uc804 \uc9c8\ud658\uc744 \uce58\ub8cc\ud558\ub294 \ub370 \ub3c4\uc6c0\uc774 \ub420 \uc218 \uc788\uc2b5\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">&quot;EB\uc5d0 \ub300\ud55c \uc5b4\ub5a4 \uc131\uacf5, \uc5b4\ub5a4 \uce58\ub8cc\ubc95, \uc5b4\ub5a4 \uc644\uce58\ubc95\uc774\ub77c\ub3c4 \ub2e4\ub978 \ubcf5\uc7a1\ud55c \uc720\uc804 \uc9c8\ud658\uc744 \uce58\ub8cc\ud560 \uc218 \uc788\ub294 \uac00\ub2a5\uc131\uc744 \uc5f4\uc5b4\uc904 \uac83\uc785\ub2c8\ub2e4.&quot;\ub77c\uace0 \ud0d5 \ubc15\uc0ac\ub294 \ub9d0\ud569\ub2c8\ub2e4. &quot;EB\ub294 \uc720\uc804\uc790 \uce58\ub8cc\uc758 \uc120\ub450\uc8fc\uc790\uac00 \ub420 \uac83\uc785\ub2c8\ub2e4!&quot;\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\uc774 \uc5ec\uc815 \ub0b4\ub0b4 \uc790\uc120 \ud65c\ub3d9\uc740 \uc911\uc694\ud55c \uc5ed\ud560\uc744 \ud588\uc2b5\ub2c8\ub2e4. \uae30\ubd80\uc790\ub4e4\uc758 \uc9c0\uc6d0\uc740 1\uc0c1 \uc784\uc0c1 \uc2dc\ud5d8 \uc2dc\uc791\uc5d0 \uc911\uc694\ud55c \uc5ed\ud560\uc744 \ud588\uc2b5\ub2c8\ub2e4. \uc774 \uc2dc\ud5d8\uc740 \ucd08\uae30 \uac00\ub2a5\uc131\uc744 \ubcf4\uc5ec\uc8fc\uc5c8\uace0, \uc544\ubca0\uc624\ub098 \ud14c\ub77c\ud4e8\ud2f1\uc2a4(Abeona Therapeutics), \ud45c\ud53c\uc218\ud3ec\uc99d \uc758\ud559 \uc5f0\uad6c \uc7ac\ub2e8(Epidermolysis Bullosa Medical Research Foundation), \uadf8\ub9ac\uace0 EB \uc5f0\uad6c \ud30c\ud2b8\ub108\uc2ed(EB Research Partnership)\uc744 \ud3ec\ud568\ud55c \ub300\uaddc\ubaa8 \ud22c\uc790\uc790\ub97c \uc720\uce58\ud558\ub294 \ub370 \ub3c4\uc6c0\uc774 \ub418\uc5c8\uc2b5\ub2c8\ub2e4. \uc774\ub7ec\ud55c \uae30\uc138\ub97c \ubc14\ud0d5\uc73c\ub85c, \uc790\uc120\uac00 \ubcf4\uc6e8\uc774 \ub9ac(Bowei Lee)\uc758 \uac00\uc871\uc740 \ucd5c\uadfc \uadf8\uc758 \uc5c5\uc801\uc744 \uae30\ub9ac\uae30 \uc704\ud574<\/span><span data-contrast=\"auto\">EB\uc640 \ud76c\uadc0\uc9c8\ud658\uc5d0 \ub300\ud55c \uc5f0\uad6c\ub97c \uc9c4\ud589\ud569\ub2c8\ub2e4.\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\ud384 \uc7bc\uc758 \uc5d0\ub514 \ubca0\ub354\uc640 \uac19\uc740 \uc720\uba85 \uc778\uc0ac\ub4e4\uc758 \ud65c\uc57d\uc73c\ub85c EB\uc5d0 \ub300\ud55c \uc778\uc2dd\uc774 \ub192\uc544\uc9c0\ub294 \uc2dc\uae30\uc774\uae30\ub3c4 \ud569\ub2c8\ub2e4. \uadf8\uc758 \uc0c8 \ub2e4\ud050\uba58\ud130\ub9ac\ub294 <\/span><a href=\"https:\/\/www.matteroftimefilm.com\/\"><i><span data-contrast=\"none\">\uc2dc\uac04 \ubb38\uc81c<\/span><\/i><\/a><span data-contrast=\"none\">EB\uc640 \ud0d5\uc758 \uc5f0\uad6c \uc5ec\uc815\uc5d0 \uc601\ud5a5\uc744 \ubc1b\uc740 \uc0ac\ub78c\ub4e4\uc758 \uc774\uc57c\uae30\ub97c \ub2f4\uc740 \uadf8\uc758 \uccab \uc194\ub85c \ud22c\uc5b4\uc5d0 \uc774\uc740 \uc774 \uc791\ud488\uc740 \uc774\ubc88 \ub2ec \ucd08 \ud2b8\ub77c\uc774\ubca0\uce74 \uc601\ud654\uc81c\uc5d0\uc11c \ucd08\uc5f0\ub418\uc5c8\uc2b5\ub2c8\ub2e4.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>\uac00\uc7a5 \uc2ec\uac01\ud55c \ud53c\ubd80 \uc9c8\ud658 \uc911 \ud558\ub098\ub97c \uc553\uace0 \uc788\ub294 \uac00\uc871\ub4e4\uc5d0\uac8c \uc774\uc81c \ub354 \ud070 \ud76c\ub9dd\uc774 \uc0dd\uacbc\uc2b5\ub2c8\ub2e4. \ucd5c\uadfc 3\uc0c1 \uc784\uc0c1 \uc2dc\ud5d8\uc5d0\uc11c \uc720\uc804\uc790\u2026<\/p>","protected":false},"author":7,"featured_media":21391,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[148,164],"class_list":["post-21390","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-in-the-news","category-research"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - 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