{"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\/zh\/impact-stories\/donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease\/","title":{"rendered":"\u6350\u52a9\u8005\u652f\u6301\u63a8\u52a8EB\uff08\u4e00\u79cd\u7f55\u89c1\u4e14\u75bc\u75db\u7684\u76ae\u80a4\u75c5\uff09\u7684\u65b0\u6cbb\u7597\u65b9\u6cd5"},"content":{"rendered":"<p><span data-contrast=\"none\">\u60a3\u6709\u8fd9\u79cd\u6700\u4ee4\u4eba\u75db\u82e6\u7684\u76ae\u80a4\u75be\u75c5\u7684\u5bb6\u5ead\u73b0\u5728\u6709\u4e86\u66f4\u591a\u5e0c\u671b\u3002\u6700\u8fd1\uff0c\u4e00\u9879\u4e09\u671f\u4e34\u5e8a\u8bd5\u9a8c\u8868\u660e\uff0c\u57fa\u56e0\u6cbb\u7597\u76ae\u80a4\u79fb\u690d\u663e\u8457\u6539\u5584\u4e86\u5927\u75b1\u6027\u8868\u76ae\u677e\u89e3\u75c7 (EB) \u60a3\u8005\u3002\u7ed3\u679c\u663e\u793a\uff0c <\/span><a href=\"https:\/\/med.stanford.edu\/news\/all-news\/2025\/06\/epidermolysis-bullosa.html\"><span data-contrast=\"none\">\u53d1\u8868\u4e8e <\/span><i><span data-contrast=\"none\">\u300a\u67f3\u53f6\u5200\u300b<\/span><\/i><\/a><span data-contrast=\"none\">\uff0c\u8868\u660e\u65af\u5766\u798f\u533b\u5b66\u9662\u7684\u7814\u7a76\u4eba\u5458\u5728\u5f00\u53d1\u65b0\u7597\u6cd5\u4e2d\u53d1\u6325\u4e86\u81f3\u5173\u91cd\u8981\u7684\u4f5c\u7528\u3002<\/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\">\u516c\u4f17\u610f\u8bc6\u7684\u63d0\u9ad8\u548c\u6177\u6168\u7684\u6350\u52a9\u652f\u6301\u4e5f\u5bf9\u8fd9\u4e00\u7a81\u7834\u8d77\u5230\u4e86\u91cd\u8981\u4f5c\u7528\u3002 <\/span><span data-contrast=\"none\">\u662f\u65af\u5766\u798f\u9732\u897f\u5c14\u00b7\u5e15\u5361\u5fb7\u513f\u7ae5\u533b\u9662\u7684\u76ae\u80a4\u75c5\u5b66\u6559\u6388\u3001\u533b\u5b66\u535a\u58eb\u3001\u54f2\u5b66\u535a\u58ebJean Y. Tang\uff0c\u5979\u8d1f\u8d23\u6cbb\u7597EB\u60a3\u513f\u3002\u8fd9\u4e9b\u76ae\u80a4\u79fb\u690d\u4e8e4\u670829\u65e5\u83b7\u5f97\u7f8e\u56fd\u98df\u54c1\u836f\u54c1\u76d1\u7763\u7ba1\u7406\u5c40\uff08FDA\uff09\u7684\u6279\u51c6\u3002\u8fd9\u4e9b\u79fb\u690d\u76ae\u5c06\u5728\u5168\u7f8e\u4e94\u5bb6\u533b\u9662\u4f7f\u7528\uff0c\u5176\u4e2d\u5305\u62ec\u5e15\u5361\u5fb7\u513f\u7ae5\u533b\u9662\u3002\u5e15\u5361\u5fb7\u513f\u7ae5\u533b\u9662\u7684\u76ae\u80a4\u75c5\u5b66\u6559\u6388\u3001\u533b\u5b66\u535a\u58ebJoyce Teng\u5c06\u4e0e\u5916\u79d1\u533b\u751f\u548c\u9ebb\u9189\u5e08H. Peter Lorenz\u3001\u533b\u5b66\u535a\u58ebRohit Khosla\uff08\u7f8e\u56fd\u5916\u79d1\u533b\u5e08\u5b66\u4f1a\u9662\u58eb\uff09\u548cLouise Furakawa\u5408\u4f5c\uff0c\u5171\u540c\u7814\u7a76\u8fd9\u4e9b\u79fb\u690d\u76ae\u7684\u5e94\u7528\u3002\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 \u8868\u793a\uff1a\u201c\u6148\u5584\u4e8b\u4e1a\u5728\u63a8\u52a8\u65af\u5766\u798f\u5927\u5b66\u7814\u7a76 EB \u6cbb\u7597\u65b0\u7597\u6cd5\u65b9\u9762\u53d1\u6325\u4e86\u91cd\u8981\u4f5c\u7528\u3002\u201d<\/span><span data-contrast=\"none\"> \u8be5\u7814\u7a76\u7684\u5171\u540c\u4f5c\u8005<\/span><span data-contrast=\"none\">\u201c\u81ea\u4ece\u621110\u5e74\u524d\u5f00\u59cb\u4ece\u4e8b\u8be5\u9886\u57df\u7684\u7814\u7a76\u4ee5\u6765\uff0c\u6211\u4eec\u5df2\u7ecf\u5bf9\u8fd9\u79cd\u75be\u75c5\u6709\u4e86\u5927\u91cf\u7684\u4e86\u89e3\uff0c\u73b0\u5728\u53c8\u6709\u4e86\u4e00\u79cd\u4ee4\u4eba\u5174\u594b\u7684\u3001\u7ecfFDA\u6279\u51c6\u7684\u65b0\u7597\u6cd5\u3002\u6211\u4eec\u5c06\u7ee7\u7eed\u52aa\u529b\uff0c\u52a0\u901f\u6cbb\u7597\uff0c\u6700\u7ec8\u627e\u5230\u6cbb\u6108\u65b9\u6cd5\u3002\u201d\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          \u201c\u6350\u52a9\u8005\u7684\u652f\u6301\u81f3\u5173\u91cd\u8981\u2026\u2026\u201d\n        <\/h2>\n\n                  <p class=\"component-cta-description\">\n            \u6211\u4eec\u7684\u6350\u52a9\u8005\u793e\u533a\u4f7f\u8fd9\u4e9b\u7a81\u7834\u6210\u4e3a\u53ef\u80fd\u3002\u63a8\u52a8\u513f\u7ae5\u5065\u5eb7\u9886\u57df\u7684\u65b0\u4e00\u8f6e\u521b\u65b0\u3002\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=\"\u7acb\u5373\u6350\u8d60\" >\n      \u7acb\u5373\u6350\u8d60\n  \n  <\/a>\n                        \n                              <\/div>\n      <\/div>\n\n          <\/div>\n  <\/div>\n<\/section>\n\n<p><span data-contrast=\"none\">\u7f8e\u56fd\u6709\u591a\u8fbe5000\u4eba\u60a3\u6709EB\uff0c\u5176\u4e2d\u5927\u591a\u6570\u662f\u513f\u7ae5\uff0c\u56e0\u4e3a\u8fd9\u79cd\u75be\u75c5\u4f1a\u5bfc\u81f4\u9884\u671f\u5bff\u547d\u7f29\u77ed\u3002\u8fd9\u79cd\u75be\u75c5\u662f\u7531\u80f6\u539f\u86cb\u767dVII\u57fa\u56e0\u7f3a\u9677\u5f15\u8d77\u7684\uff0c\u800c\u80f6\u539f\u86cb\u767dVII\u662f\u4e00\u79cd\u8fde\u63a5\u76ae\u80a4\u4e0a\u4e0b\u5c42\u6240\u5fc5\u9700\u7684\u86cb\u767d\u8d28\u3002\u91cd\u5ea6EB\u60a3\u8005\u7684\u76ae\u80a4\u975e\u5e38\u654f\u611f\uff0c\u5373\u4f7f\u662f\u8f7b\u5fae\u7684\u89e6\u78b0\u4e5f\u4f1a\u5bfc\u81f4\u76ae\u80a4\u8d77\u6c34\u6ce1\uff0c\u6700\u7ec8\u5f62\u6210\u65e0\u6cd5\u6108\u5408\u7684\u5927\u9762\u79ef\u5f00\u653e\u6027\u4f24\u53e3\uff0c\u9020\u6210\u5267\u70c8\u75bc\u75db\u3002\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\">\u6765\u81ea\u963f\u62c9\u5df4\u9a6c\u5dde\u4f2f\u660e\u7ff0\u768420\u5c81\u5973\u5b69\u590f\u6d1b\u7279\u00b7\u5e03\u6717\uff08Charlotte Brown\uff09\u5728\u53c2\u52a02021\u5e74\u7b2c\u4e09\u671f\u4e34\u5e8a\u8bd5\u9a8c\u540e\uff0cEB\u5e26\u6765\u7684\u75bc\u75db\u611f\u6bd4\u4e4b\u524d\u51cf\u8f7b\u4e86\u5f88\u591a\u3002\u5979\u5728\u8bd5\u9a8c\u4e2d\u63a5\u53d7\u7684\u57fa\u56e0\u5de5\u7a0b\u79fb\u690d\u5927\u5927\u51cf\u8f7b\u4e86\u591a\u5904\u6162\u6027\u4f24\u53e3\u7684\u4e25\u91cd\u7a0b\u5ea6\u3002\u5979\u751a\u81f3\u8fd8\u80fd\u7ee7\u7eed\u505a\u81ea\u5df1\u70ed\u7231\u7684\u5de5\u4f5c\u2014\u2014\u836f\u5242\u5e08\u3002\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\">\u201c\u8bf4\u5b9e\u8bdd\uff0c\u8fd9\u771f\u7684\u6539\u53d8\u4e86\u6211\u7684\u751f\u6d3b\uff0c\u201d\u5e03\u6717\u8bf4\u3002\u201c\u6211\u611f\u89c9\u597d\u591a\u4e86\u3002\u201d<\/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\">\u5e03\u6717\u662f\u53c2\u4e0e\u8fd9\u9879\u7814\u7a76\u7684 11 \u4eba\u4e4b\u4e00\uff0c\u5176\u4e2d\u5927\u591a\u6570\u4eba\u5728\u76ae\u80a4\u7684\u591a\u4e2a\u90e8\u4f4d\u63a5\u53d7\u4e86\u57fa\u56e0\u6cbb\u7597\u7247\u3002<\/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\">\u8fd9\u9879\u65b0\u7597\u6cd5\u9700\u8981\u4ece\u60a3\u8005\u672a\u53d7\u4f24\u7684\u76ae\u80a4\u4e0a\u53d6\u4e00\u5c0f\u5757\u6d3b\u68c0\u6837\u672c\uff0c\u7136\u540e\u5728\u5b9e\u9a8c\u5ba4\u4e2d\u5229\u7528\u75c5\u6bd2\u5c06\u7a81\u53d8\u57fa\u56e0\u7684\u5065\u5eb7\u62f7\u8d1d\u9012\u9001\u5230\u60a3\u8005\u7684\u76ae\u80a4\u7ec6\u80de\u4e2d\u3002\u8fd9\u4e9b\u7ecf\u8fc7\u57fa\u56e0\u5de5\u7a0b\u6539\u9020\u7684\u7ec6\u80de\u4f1a\u88ab\u57f9\u80b2\u6210\u5927\u7ea6\u4fe1\u7528\u5361\u5927\u5c0f\u7684\u76ae\u80a4\u7247\u3002\u4e4b\u540e\uff0c\u7ecf\u8fc7\u5904\u7406\u7684\u76ae\u80a4\u7ec6\u80de\u7247\u4f1a\u88ab\u624b\u672f\u79fb\u690d\u5230\u60a3\u8005\u65e0\u6cd5\u6108\u5408\u7684\u4f24\u53e3\u4e0a\u3002\u8fd9\u79cd\u7ec6\u80de\u7597\u6cd5\u53ef\u4ee5\u63d0\u4f9b\u957f\u671f\u7684VII\u578b\u80f6\u539f\u86cb\u767d\u6765\u6e90\uff0c\u5e76\u6cbb\u6108\u60a3\u8005\u7684\u6162\u6027\u75bc\u75db\u6027\u4f24\u53e3\u3002\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\">\u201c\u5f53\u4f60\u770b\u5230\u60a3\u6709 EB \u7684\u60a3\u8005\uff0c\u5e76\u4e86\u89e3\u8fd9\u79cd\u75be\u75c5\u5bf9\u4ed6\u4eec\u9020\u6210\u7684\u4e25\u91cd\u5f71\u54cd\u65f6\uff0c\u4f60\u4f1a\u7aed\u5c3d\u5168\u529b\u53bb\u5e2e\u52a9\u4ed6\u4eec\uff0c\u201d \u6cbb\u6108\u548c\u786e\u8bca\u533b\u5b66\u4e2d\u5fc3 (CDCM) \u8054\u5408\u4e3b\u4efb\u517c\u8054\u5408\u521b\u59cb\u4eba\u3001\u533b\u5b66\u535a\u58eb\u3001\u54f2\u5b66\u535a\u58eb Anthony Oro \u8bf4\u9053\u3002 <\/span><i><span data-contrast=\"none\">\u5c24\u91d1\u548c\u683c\u6d1b\u4e3d\u4e9a\u00b7\u9c8d\u5c14\u76ae\u80a4\u75c5\u5b66\u6559\u6388<\/span><\/i><span data-contrast=\"none\">\u201c\u73b0\u5728\u6211\u4eec\u6709\u4e86\u53ef\u4ee5\u6c38\u4e45\u4fee\u590d\u53d7\u635f\u76ae\u80a4\u7684\u89e3\u51b3\u65b9\u6848\u3002\u201d<\/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\">\u8fd9\u5e76\u975e\u4e00\u671d\u4e00\u5915\u4e4b\u529f\u3002\u73b0\u4e3a\u76ae\u80a4\u79d1\u8363\u4f11\u6559\u6388\u7684\u533b\u5b66\u535a\u58ebGene Bauer\u572820\u591a\u5e74\u524d\u5c06EB\u7814\u7a76\u5e26\u5230\u4e86\u65af\u5766\u798f\u5927\u5b66\uff0c\u5e76\u7ec4\u5efa\u4e86\u4e00\u4e2a\u7814\u7a76\u56e2\u961f\uff0c\u6700\u7ec8\u53d6\u5f97\u4e86\u8fd9\u4e00\u7a81\u7834\u3002\u76ae\u80a4\u79fb\u690d\u9996\u5148\u5728\u7531\u73b0\u4e3a\u76ae\u80a4\u79d1\u8363\u4f11\u6559\u6388\u7684\u533b\u5b66\u535a\u58ebAlfred Lane\u548c\u76ae\u80a4\u79d1\u526f\u6559\u6388\u533b\u5b66\u535a\u58ebPeter Marinkovich\u9886\u5bfc\u76841\u671f\u4e34\u5e8a\u8bd5\u9a8c\u4e2d\u8fdb\u884c\u6d4b\u8bd5\u3002\u9ad8\u7ea7\u7814\u7a76\u5458Zurab Siprashvili\u548c\u76ae\u80a4\u79d1\u7cfb\u4e3b\u4efbPaul Khavari\u4e5f\u63d0\u4f9b\u4e86\u989d\u5916\u7684\u652f\u6301\uff0c\u4ed6\u4eec\u81f4\u529b\u4e8e\u4ece\u7ec6\u80de\u5230\u5c0f\u9f20\uff0c\u518d\u5230\u60a3\u8005\uff0c\u5f00\u53d1\u8fd9\u79cd\u7597\u6cd5\u3002<\/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\">\u65f6\u95f4\u5feb\u8fdb\u52302017\u5e74\uff0cCDCM\u6210\u7acb\u4e4b\u521d\u7684\u4f7f\u547d\u662f\u5c06\u79d1\u7814\u6210\u679c\u4ece\u5b9e\u9a8c\u5ba4\u8f6c\u5316\u4e3a\u4e34\u5e8a\u5e94\u7528\u3002\u51e0\u5e74\u540e\uff0cCDCM\u7814\u7a76\u5458\u5510\u5973\u58eb\u5f00\u59cb\u4e86\u5979\u76843\u671f\u4e34\u5e8a\u8bd5\u9a8c\u3002\u76ae\u80a4\u79fb\u690d\u662f<\/span><span data-contrast=\"auto\">\u8fd9\u662f CDCM \u63a8\u51fa\u7684\u9996\u4e2a\u83b7\u5f97 FDA \u6279\u51c6\u7684\u4ea7\u54c1\uff0c\u6807\u5fd7\u7740\u8be5\u673a\u6784\u7684\u4e00\u4e2a\u91cd\u8981\u91cc\u7a0b\u7891\u3002<\/span><span 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