{"id":8335,"date":"2026-08-07T11:41:14","date_gmt":"2026-08-07T08:41:14","guid":{"rendered":"https:\/\/dmdwarrior.com\/?p=8335"},"modified":"2026-08-07T12:01:11","modified_gmt":"2026-08-07T09:01:11","slug":"dmd-associations-hashtag-campaigns-effectiveness","status":"publish","type":"post","link":"https:\/\/dmdwarrior.com\/zh\/dmd-associations-hashtag-campaigns-effectiveness\/","title":{"rendered":"\u793e\u4ea4\u5a92\u4f53\u8bdd\u9898\u6d3b\u52a8\u771f\u7684\u80fd\u5e2e\u52a9\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u534f\u4f1a\u6539\u5584\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u60a3\u8005\u5bb6\u5ead\u83b7\u5f97\u5df2\u6279\u51c6\u6cbb\u7597\u7684\u673a\u4f1a\u5417\uff1f"},"content":{"rendered":"<p class=\"wp-block-paragraph\">\u6bcf\u5e74\uff0c\u6570\u5341\u4e2a\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7 (DMD) \u534f\u4f1a\u90fd\u4f1a\u7ec4\u7ec7\u793e\u4ea4\u5a92\u4f53\u6d3b\u52a8\uff0c\u9f13\u52b1\u60a3\u8005\u5bb6\u5c5e\u548c\u652f\u6301\u8005\u5728 X\uff08\u4ee5\u524d\u79f0\u4e3a Twitter\uff09\u3001Instagram\u3001Facebook \u548c LinkedIn \u7b49\u5e73\u53f0\u4e0a\u5206\u4eab\u8bdd\u9898\u6807\u7b7e\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>DMD \u534f\u4f1a\u5c06\u4ea7\u751f 6 \u4e07\u751a\u81f3 10 \u4e07\u4e2a\u8bdd\u9898\u6807\u7b7e\u5e16\u5b50\u7684\u6d3b\u52a8\u89c6\u4e3a\u91cd\u5927\u7684\u5ba3\u4f20\u6210\u529f\u6848\u4f8b\u3002.<\/strong> \u7136\u800c\uff0c\u793e\u4ea4\u5a92\u4f53\u5e16\u5b50\u7684\u6570\u91cf\u672c\u8eab\u5e76\u4e0d\u80fd\u8bc1\u660e\u53d6\u5f97\u4e86\u5b9e\u8d28\u6027\u8fdb\u5c55\u3002\u9664\u975e\u8fd9\u4e9b\u6d3b\u52a8\u80fd\u591f\u4e0e\u53ef\u8861\u91cf\u7684\u6539\u5584\u8054\u7cfb\u8d77\u6765\u2014\u2014\u4f8b\u5982\u66f4\u5bb9\u6613\u83b7\u5f97\u6cbb\u7597\u3001\u62a5\u9500\u653f\u7b56\u7684\u8c03\u6574\u3001\u4e34\u5e8a\u8bd5\u9a8c\u673a\u4f1a\u7684\u589e\u52a0\u6216\u653f\u7b56\u6539\u9769\u2014\u2014\u5426\u5219\u5b83\u4eec\u5c31\u6709\u53ef\u80fd\u6ca6\u4e3a\u535a\u53d6\u773c\u7403\u7684\u5671\u5934\uff0c\u800c\u975e\u771f\u6b63\u63a8\u52a8\u53d8\u9769\u7684\u5de5\u5177\u3002. <strong>\u56e0\u6b64\uff0cDMD\u534f\u4f1a\u5e94\u8be5\u516c\u5e03\u8bc1\u636e\uff0c\u8bc1\u660e\u6bcf\u9879\u6d3b\u52a8\u5b9e\u9645\u53d6\u5f97\u4e86\u54ea\u4e9b\u6210\u679c\uff0c\u8ba9\u5bb6\u5ead\u80fd\u591f\u6839\u636e\u7ed3\u679c\u800c\u4e0d\u662f\u5728\u7ebf\u53c2\u4e0e\u5ea6\u6765\u5224\u65ad\u6d3b\u52a8\u7684\u6210\u529f\u4e0e\u5426\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5bf9\u4e8e\u4e00\u4e9b\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff08DMD\uff09\u534f\u4f1a\u6765\u8bf4\uff0c\u8fd9\u79cd\u6a21\u5f0f\u5df2\u7ecf\u53f8\u7a7a\u89c1\u60ef\u3002\u53d1\u8d77\u4e00\u4e2a\u8bdd\u9898\u6807\u7b7e\uff0c\u9f13\u52b1\u6210\u5343\u4e0a\u4e07\u7684\u5e16\u5b50\uff0c\u611f\u8c22\u6240\u6709\u4eba\u7684\u53c2\u4e0e\uff0c\u5e86\u795d\u6d3b\u52a8\u7684\u6210\u529f\uff0c\u7136\u540e\u8f6c\u5411\u4e0b\u4e00\u4e2a\u8bdd\u9898\u6807\u7b7e\u3002. <strong>\u4e0e\u6b64\u540c\u65f6\uff0c\u5bb6\u4eba\u4eec\u4e0d\u7981\u8981\u95ee\u4e00\u4e2a\u66f4\u91cd\u8981\u7684\u95ee\u9898\uff1a\u5728\u53d1\u5e03\u8fd9\u4e9b\u5e16\u5b50\u4e4b\u540e\uff0c\u7a76\u7adf\u53d1\u751f\u4e86\u4ec0\u4e48\u53d8\u5316\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u56e0\u4e3a\u83b7\u6279\u7684\u6cbb\u7597\u65b9\u6848\u5e76\u975e\u901a\u8fc7\u793e\u4ea4\u5a92\u4f53\u5c31\u80fd\u83b7\u5f97\u2014\u2014\u800c\u662f\u901a\u8fc7\u4e0e\u76d1\u7ba1\u673a\u6784\u3001\u536b\u751f\u90e8\u95e8\u548c\u653f\u7b56\u5236\u5b9a\u8005\u6301\u7eed\u4e92\u52a8\u624d\u80fd\u83b7\u5f97\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u4e9b\u6d3b\u52a8\u5f80\u5f80\u80fd\u83b7\u5f97\u6210\u5343\u4e0a\u4e07\u7684\u70b9\u8d5e\u3001\u5206\u4eab\u3001\u8bc4\u8bba\u548c\u6d4f\u89c8\u91cf\u3002\u5b83\u4eec\u8425\u9020\u51fa\u4e00\u79cd\u5168\u7403\u56e2\u7ed3\u8fd0\u52a8\u7684\u5047\u8c61\uff0c\u8ba9\u5bb6\u5ead\u53ea\u9700\u70b9\u51fb\u4e00\u4e0b\u9f20\u6807\u5373\u53ef\u53c2\u4e0e\u5021\u5bfc\u6d3b\u52a8\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4f46\u5f53\u8fd9\u4e9b\u8bdd\u9898\u6807\u7b7e\u4e0d\u518d\u6d41\u884c\u4e4b\u540e\uff0c\u4e00\u4e2a\u4ee4\u4eba\u4e0d\u5b89\u7684\u95ee\u9898\u4ecd\u7136\u5b58\u5728\uff1a<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5bf9\u60a3\u8005\u800c\u8a00\uff0c\u7a76\u7adf\u53d1\u751f\u4e86\u54ea\u4e9b\u53d8\u5316\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u66f4\u591a\u513f\u7ae5\u662f\u5426\u83b7\u5f97\u4e86\u83b7\u6279\u7684\u6cbb\u7597\uff1f<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u62a5\u9500\u653f\u7b56\u662f\u5426\u6709\u6240\u6539\u5584\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u662f\u5426\u65b0\u589e\u4e86\u4e34\u5e8a\u8bd5\u9a8c\u70b9\uff1f<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5404\u56fd\u653f\u5e9c\u662f\u5426\u62e8\u4ed8\u4e86\u65b0\u7684\u8d44\u91d1\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u7b49\u5f85\u65f6\u95f4\u7f29\u77ed\u4e86\u5417\uff1f<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5f88\u591a\u65f6\u5019\uff0c\u7b54\u6848\u662f\u5426\u5b9a\u7684\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u5e76\u975e\u53cd\u5bf9\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u3002\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u4ecd\u7136\u5341\u5206\u91cd\u8981\u3002\u7136\u800c\uff0c\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u7edd\u4e0d\u5e94\u6210\u4e3a\u5021\u5bfc\u5de5\u4f5c\u7684\u6700\u7ec8\u76ee\u6807\u3002\u5bf9\u4e8e\u4ee3\u8868\u60a3\u6709\u8fdb\u884c\u6027\u4e14\u5371\u53ca\u751f\u547d\u7684\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff08DMD\uff09\u60a3\u8005\u7684\u534f\u4f1a\u800c\u8a00\uff0c\u5021\u5bfc\u5de5\u4f5c\u7684\u6700\u7ec8\u8bc4\u5224\u6807\u51c6\u5fc5\u987b\u662f\u60a3\u8005\u751f\u6d3b\u8d28\u91cf\u7684\u5207\u5b9e\u6539\u5584\uff0c\u800c\u975e\u7f51\u7edc\u53c2\u4e0e\u7edf\u8ba1\u6570\u636e\u3002.<\/p>\n\n\n\n<div class=\"wp-block-rank-math-toc-block\" id=\"rank-math-toc\"><h2>\u76ee\u5f55<\/h2><nav><ul><li><a href=\"#visibility-is-not-the-same-as-impact\">\u53ef\u89c1\u6027\u5e76\u4e0d\u7b49\u540c\u4e8e\u5f71\u54cd\u529b\u3002<\/a><\/li><li><a href=\"#the-comfort-of-easy-advocacy\">\u8f7b\u677e\u5021\u5bfc\u7684\u8212\u9002\u611f<\/a><\/li><li><a href=\"#the-metrics-that-truly-matter\">\u771f\u6b63\u91cd\u8981\u7684\u6307\u6807<\/a><\/li><li><a href=\"#why-hashtag-campaigns-rarely-influence-healthcare-policy\">\u4e3a\u4ec0\u4e48\u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\u5f88\u5c11\u80fd\u5f71\u54cd\u533b\u7597\u4fdd\u5065\u653f\u7b56<\/a><\/li><li><a href=\"#awareness-without-accountability\">\u610f\u8bc6\u89c9\u9192\u5374\u4e0d\u627f\u62c5\u8d23\u4efb<\/a><\/li><li><a href=\"#advocacy-should-challenge-systems-not-algorithms\">\u5021\u5bfc\u5e94\u8be5\u6311\u6218\u7684\u662f\u7cfb\u7edf\uff0c\u800c\u4e0d\u662f\u7b97\u6cd5\u3002<\/a><\/li><li><a href=\"#what-dmd-associations-should-do-instead\">DMD\u534f\u4f1a\u5e94\u8be5\u600e\u4e48\u505a\u5462\uff1f<\/a><ul><li><a href=\"#1-publish-annual-advocacy-impact-reports\">1. \u53d1\u5e03\u5e74\u5ea6\u5021\u5bfc\u5f71\u54cd\u62a5\u544a<\/a><\/li><li><a href=\"#2-build-strong-national-patient-registries\">2. \u5efa\u7acb\u5f3a\u5927\u7684\u56fd\u5bb6\u60a3\u8005\u767b\u8bb0\u7cfb\u7edf<\/a><\/li><li><a href=\"#3-produce-independent-scientific-reviews\">3. \u5f00\u5c55\u72ec\u7acb\u79d1\u5b66\u8bc4\u5ba1<\/a><\/li><li><a href=\"#4-demand-greater-transparency-from-industry\">4. \u8981\u6c42\u884c\u4e1a\u63d0\u9ad8\u900f\u660e\u5ea6<\/a><\/li><li><a href=\"#5-engage-policymakers-continuously\">5. \u4e0e\u653f\u7b56\u5236\u5b9a\u8005\u6301\u7eed\u6c9f\u901a<\/a><\/li><li><a href=\"#6-publish-international-access-reports\">6. \u53d1\u5e03\u56fd\u9645\u8bbf\u95ee\u62a5\u544a<\/a><\/li><li><a href=\"#7-invest-in-health-economics\">7. \u6295\u8d44\u536b\u751f\u7ecf\u6d4e\u5b66<\/a><\/li><li><a href=\"#8-create-international-advocacy-coalitions\">8. \u521b\u5efa\u56fd\u9645\u5021\u5bfc\u8054\u76df<\/a><\/li><li><a href=\"#9-define-success-before-every-campaign\">9. \u5728\u6bcf\u6b21\u6d3b\u52a8\u524d\u5b9a\u4e49\u6210\u529f\u6807\u51c6<\/a><\/li><li><a href=\"#10-use-social-media-as-a-tool-not-the-mission\">10. \u5c06\u793e\u4ea4\u5a92\u4f53\u4f5c\u4e3a\u5de5\u5177\uff0c\u800c\u975e\u5176\u76ee\u7684\u3002<\/a><\/li><\/ul><\/li><li><a href=\"#the-future-of-duchenne-advocacy\">\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5021\u5bfc\u7684\u672a\u6765<\/a><\/li><li><a href=\"#conclusion\">\u7ed3\u8bba<\/a><\/li><\/ul><\/nav><\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"visibility-is-not-the-same-as-impact\" class=\"wp-block-heading\">\u53ef\u89c1\u6027\u5e76\u4e0d\u7b49\u540c\u4e8e\u5f71\u54cd\u529b\u3002<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u73b0\u4ee3\u793e\u4ea4\u5a92\u4f53\u5956\u52b1\u7684\u662f\u66dd\u5149\u5ea6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u533b\u7597\u4fdd\u5065\u7cfb\u7edf\u5956\u52b1\u5faa\u8bc1\u5b9e\u8df5\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u662f\u5b8c\u5168\u4e0d\u540c\u7684\u7cfb\u7edf\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4e00\u9879 X \u6216 Instagram \u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\u53ef\u80fd\u4f1a\u89e6\u53ca\u6570\u767e\u4e07\u4eba\uff0c\u4f46\u4e0d\u4f1a\u5f71\u54cd\u4efb\u4f55\u62a5\u9500\u51b3\u5b9a\u6216\u52a0\u5feb\u83b7\u5f97\u6cbb\u7597\u7684\u901f\u5ea6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u9057\u61be\u7684\u662f\uff0c\u8bb8\u591aDMD\u534f\u4f1a\u4ecd\u7136\u5f3a\u8c03\u4ee5\u4e0b\u6307\u6807\uff1a<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u66dd\u5149\u6b21\u6570<\/li>\n\n\n\n<li>\u80a1\u4efd\u6570\u91cf<\/li>\n\n\n\n<li>\u70ed\u95e8\u8bdd\u9898\u6807\u7b7e<\/li>\n\n\n\n<li>\u53c2\u4e0e\u7387<\/li>\n\n\n\n<li>\u7c89\u4e1d\u6570\u91cf\u589e\u52a0<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u4e9b\u6570\u5b57\u53ef\u80fd\u8868\u660e\u6c9f\u901a\u662f\u6210\u529f\u7684\uff0c\u4f46\u5b83\u4eec\u5e76\u4e0d\u80fd\u8bf4\u660e\u60a3\u8005\u662f\u5426\u4ece\u4e2d\u83b7\u5f97\u4e86\u4efb\u4f55\u5b9e\u8d28\u6027\u7684\u76ca\u5904\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u60a3\u8005\u4e0d\u4f1a\u56e0\u4e3a\u67d0\u4e2a\u8bdd\u9898\u6807\u7b7e\u8d70\u7ea2\u800c\u5f97\u4e0d\u5230\u6cbb\u7597\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4ed6\u4eec\u4e4b\u6240\u4ee5\u80fd\u5f97\u5230\u6cbb\u7597\uff0c\u662f\u56e0\u4e3a\u653f\u7b56\u53d1\u751f\u4e86\u53d8\u5316\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u56fd\u5bb6\u533b\u7597\u4fdd\u5065\u653f\u7b56\u7684\u5236\u5b9a\u5e76\u975e\u53d7\u70ed\u95e8\u8bdd\u9898\u6807\u7b7e\u7684\u5f71\u54cd\uff0c\u800c\u662f\u57fa\u4e8e\u79d1\u5b66\u8bc1\u636e\u3001\u536b\u751f\u7ecf\u6d4e\u5b66\u3001\u76d1\u7ba1\u5ba1\u67e5\u4ee5\u53ca\u4e0e\u51b3\u7b56\u8005\u7684\u6301\u7eed\u6c9f\u901a\u3002\u9605\u8bfb\u66f4\u591a\uff1a <a href=\"https:\/\/dmdwarrior.com\/zh\/dmd-donations-how-associations-use-donations\/\" target=\"_blank\" rel=\"noreferrer noopener\">DMD\u534f\u4f1a\u5982\u4f55\u4f7f\u7528\u6350\u6b3e<\/a><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"the-comfort-of-easy-advocacy\" class=\"wp-block-heading\">\u8f7b\u677e\u5021\u5bfc\u7684\u8212\u9002\u611f<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\u53d8\u5f97\u5982\u6b64\u666e\u904d\u662f\u6709\u5176\u5b9e\u9645\u539f\u56e0\u7684\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5b83\u4eec\u4ef7\u683c\u76f8\u5bf9\u4fbf\u5b9c\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5b83\u4eec\u6240\u9700\u7684\u89c4\u5212\u5de5\u4f5c\u91cf\u6709\u9650\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5fd7\u613f\u8005\u53ef\u4ee5\u4ece\u4efb\u4f55\u5730\u65b9\u53c2\u4e0e\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>DMD\u534f\u4f1a\u53ef\u4ee5\u8fc5\u901f\u5728\u591a\u4e2a\u5e73\u53f0\u4e0a\u5c55\u73b0\u51fa\u660e\u663e\u7684\u6d3b\u52a8\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u8fd9\u4e9b\u7279\u70b9\u672c\u8eab\u90fd\u4e0d\u662f\u8d1f\u9762\u7684\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u7136\u800c\uff0c\u5bb9\u6613\u7684\u5ba3\u4f20\u7edd\u4e0d\u80fd\u53d6\u4ee3\u6709\u6548\u7684\u5ba3\u4f20\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5982\u679c DMD \u534f\u4f1a\u53cd\u590d\u6295\u5165\u65f6\u95f4\u5f00\u5c55\u6d3b\u52a8\uff0c\u867d\u7136\u8fd9\u4e9b\u6d3b\u52a8\u80fd\u5f15\u8d77\u5173\u6ce8\uff0c\u4f46\u5374\u672a\u80fd\u6d88\u9664\u8bca\u65ad\u3001\u6cbb\u7597\u3001\u62a5\u9500\u6216\u4e34\u5e8a\u7814\u7a76\u65b9\u9762\u7684\u969c\u788d\uff0c\u90a3\u4e48\u5b83\u5e94\u8be5\u8bda\u5b9e\u5730\u95ee\u95ee\u81ea\u5df1\uff0c\u8fd9\u4e9b\u8d44\u6e90\u662f\u5426\u53ef\u4ee5\u66f4\u6709\u6548\u5730\u7528\u4e8e\u5176\u4ed6\u5730\u65b9\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u6bcf\u82b1\u4e00\u4e2a\u5c0f\u65f6\u505a\u5ba3\u4f20\uff0c\u90fd\u4f1a\u4ea7\u751f\u673a\u4f1a\u6210\u672c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5bf9\u4e8e\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u60a3\u8005\u5bb6\u5ead\u800c\u8a00\uff0c\u65f6\u95f4\u4e0d\u662f\u4ee5\u6708\u6216\u5e74\u6765\u8861\u91cf\u7684\uff0c\u800c\u662f\u4ee5\u808c\u8089\u840e\u7f29\u7684\u4e0d\u53ef\u9006\u8f6c\u7684\u8fdb\u7a0b\u6765\u8861\u91cf\u7684\u3002\u5728\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u4e2d\uff0c\u6bcf\u4e2a\u6708\u90fd\u81f3\u5173\u91cd\u8981\uff0c\u56e0\u4e3a\u6bcf\u4e2a\u6708\u82e5\u4e0d\u8fdb\u884c\u6709\u6548\u5e72\u9884\uff0c\u90fd\u53ef\u80fd\u610f\u5473\u7740\u808c\u8089\u529f\u80fd\u6c38\u8fdc\u65e0\u6cd5\u6062\u590d\u3002\u7b80\u800c\u8a00\u4e4b\uff1a\u65f6\u95f4\u5c31\u662f\u808c\u8089\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"the-metrics-that-truly-matter\" class=\"wp-block-heading\">\u771f\u6b63\u91cd\u8981\u7684\u6307\u6807<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u5982\u679c DMD \u534f\u4f1a\u60f3\u8981\u8bc1\u660e\u5176\u6709\u6548\u6027\uff0c\u5c31\u5e94\u8be5\u62a5\u544a\u76f4\u63a5\u5f71\u54cd\u60a3\u8005\u7684\u7ed3\u679c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4f8b\u5982\uff1a<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u4e0e\u536b\u751f\u90e8\u95e8\u4e3e\u884c\u4e86\u591a\u5c11\u6b21\u4f1a\u8bae\uff1f<\/li>\n\n\n\n<li>\u4e0e\u76d1\u7ba1\u673a\u6784\u8fdb\u884c\u4e86\u591a\u5c11\u6b21\u78cb\u5546\uff1f<\/li>\n\n\n\n<li>\u62a5\u9500\u653f\u7b56\u662f\u5426\u6709\u6240\u6539\u8fdb\uff1f<\/li>\n\n\n\n<li>\u6709\u591a\u5c11\u4e34\u5e8a\u8bd5\u9a8c\u673a\u4f1a\uff1f<\/li>\n\n\n\n<li>\u56fd\u5bb6\u62a4\u7406\u6807\u51c6\u662f\u5426\u5df2\u66f4\u65b0\uff1f<\/li>\n\n\n\n<li>\u6709\u591a\u5c11\u5bb6\u5ead\u83b7\u5f97\u4e86\u76f4\u63a5\u63f4\u52a9\uff1f<\/li>\n\n\n\n<li>\u8bca\u65ad\u7b49\u5f85\u65f6\u95f4\u662f\u5426\u7f29\u77ed\u4e86\uff1f<\/li>\n\n\n\n<li>\u662f\u5426\u5efa\u7acb\u4e86\u65b0\u7684\u591a\u5b66\u79d1\u8bca\u7597\u4e2d\u5fc3\uff1f<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u4e9b\u6307\u6807\u53cd\u6620\u51fa\u53d6\u5f97\u4e86\u663e\u8457\u8fdb\u5c55\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u793e\u4ea4\u5a92\u4f53\u4e92\u52a8\u5e76\u975e\u5982\u6b64\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"why-hashtag-campaigns-rarely-influence-healthcare-policy\" class=\"wp-block-heading\">\u4e3a\u4ec0\u4e48\u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\u5f88\u5c11\u80fd\u5f71\u54cd\u533b\u7597\u4fdd\u5065\u653f\u7b56<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u533b\u7597\u4fdd\u5065\u51b3\u7b56\u5e76\u975e\u901a\u8fc7\u793e\u4ea4\u5a92\u4f53\u505a\u51fa\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u653f\u5e9c\u548c\u76d1\u7ba1\u673a\u6784\u4f9d\u8d56\u4e8e\uff1a<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u4e34\u5e8a\u8bc1\u636e<\/li>\n\n\n\n<li>\u536b\u751f\u7ecf\u6d4e\u5b66<\/li>\n\n\n\n<li>\u957f\u671f\u5b89\u5168\u6027\u6570\u636e<\/li>\n\n\n\n<li>\u9884\u7b97\u5f71\u54cd\u5206\u6790<\/li>\n\n\n\n<li>\u79d1\u5b66\u987e\u95ee\u59d4\u5458\u4f1a<\/li>\n\n\n\n<li>\u60a3\u8005\u767b\u8bb0\u518c<\/li>\n\n\n\n<li>\u4e13\u5bb6\u54a8\u8be2<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u6ca1\u6709\u54ea\u4e2a\u536b\u751f\u90e8\u95e8\u4f1a\u56e0\u4e3a\u67d0\u4e2a\u8bdd\u9898\u8fde\u7eed\u4e24\u5929\u6210\u4e3a\u70ed\u95e8\u5c31\u6279\u51c6\u62a5\u9500\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u540c\u6837\uff0c\u5236\u836f\u516c\u53f8\u5e76\u4e0d\u4f1a\u56e0\u4e3a\u6210\u5343\u4e0a\u4e07\u7684\u7528\u6237\u8f6c\u53d1\u4e86\u540c\u4e00\u4e2a\u8bdd\u9898\u6807\u7b7e\u5c31\u63d0\u9ad8\u900f\u660e\u5ea6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u653f\u7b56\u53d8\u9769\u662f\u901a\u8fc7\u6301\u7eed\u7684\u3001\u6709\u8bc1\u636e\u652f\u6301\u7684\u53c2\u4e0e\u6765\u5b9e\u73b0\u7684\uff0c\u800c\u4e0d\u662f\u901a\u8fc7\u7f51\u7edc\u66dd\u5149\u5ea6\u7684\u6682\u65f6\u6fc0\u589e\u6765\u5b9e\u73b0\u7684\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"awareness-without-accountability\" class=\"wp-block-heading\">\u610f\u8bc6\u89c9\u9192\u5374\u4e0d\u627f\u62c5\u8d23\u4efb<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u5ba3\u4f20\u6d3b\u52a8\u901a\u5e38\u4f1a\u547c\u5401\u516c\u4f17\u652f\u6301\u60a3\u8005\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u662f\u4e00\u4e2a\u91cd\u8981\u7684\u76ee\u6807\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u7136\u800c\uff0cDMD\u534f\u4f1a\u4e5f\u5e94\u8be5\u627f\u62c5\u8d77\u81ea\u8eab\u7684\u8d23\u4efb\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u60a3\u8005\u6709\u6743\u77e5\u9053\uff1a<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>\u5b9e\u73b0\u4e86\u54ea\u4e9b\u76ee\u6807\uff1f<\/strong><\/li>\n\n\n\n<li><strong>\u8fd8\u6709\u54ea\u4e9b\u627f\u8bfa\u5c1a\u672a\u5151\u73b0\uff1f<\/strong><\/li>\n\n\n\n<li><strong>\u76ee\u524d\u8fd8\u5b58\u5728\u54ea\u4e9b\u653f\u7b56\u969c\u788d\uff1f<\/strong><\/li>\n\n\n\n<li><strong>\u8fc7\u53bb\u4e00\u5e74\u4e2d\u53d6\u5f97\u4e86\u54ea\u4e9b\u53ef\u8861\u91cf\u7684\u8fdb\u5c55\uff1f<\/strong><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u5e74\u5ea6\u62a5\u544a\u5e94\u51cf\u5c11\u5bf9\u793e\u4ea4\u5a92\u4f53\u5206\u6790\u7684\u5173\u6ce8\uff0c\u66f4\u591a\u5730\u5173\u6ce8\u60a3\u8005\u6cbb\u7597\u7ed3\u679c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u900f\u660e\u5ea6\u589e\u5f3a\u4fe1\u4efb\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"advocacy-should-challenge-systems-not-algorithms\" class=\"wp-block-heading\">\u5021\u5bfc\u5e94\u8be5\u6311\u6218\u7684\u662f\u7cfb\u7edf\uff0c\u800c\u4e0d\u662f\u7b97\u6cd5\u3002<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u7b97\u6cd5\u4f1a\u5956\u52b1\u60c5\u611f\u5316\u7684\u5185\u5bb9\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u533b\u7597\u4fdd\u5065\u7cfb\u7edf\u4f1a\u5bf9\u7ed3\u6784\u5316\u7684\u8bc1\u636e\u505a\u51fa\u53cd\u5e94\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u56e0\u6b64\uff0c\u6210\u529f\u7684\u5021\u5bfc\u9700\u8981\u76f4\u63a5\u4e0e\u80fd\u591f\u6539\u53d8\u60a3\u8005\u751f\u6d3b\u7684\u673a\u6784\u8fdb\u884c\u63a5\u89e6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u5305\u62ec\uff1a<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u536b\u751f\u90e8<\/li>\n\n\n\n<li>\u76d1\u7ba1\u673a\u6784<\/li>\n\n\n\n<li>\u62a5\u9500\u673a\u6784<\/li>\n\n\n\n<li>\u4e34\u5e8a\u6307\u5357\u59d4\u5458\u4f1a<\/li>\n\n\n\n<li>\u533b\u9662\u7ba1\u7406\u4eba\u5458<\/li>\n\n\n\n<li>\u533b\u5b66\u534f\u4f1a<\/li>\n\n\n\n<li>\u7814\u7a76\u7f51\u7edc<\/li>\n\n\n\n<li>\u5236\u836f\u516c\u53f8<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u771f\u6b63\u7684\u5021\u5bfc\u5f80\u5f80\u662f\u7f13\u6162\u7684\u3001\u6280\u672f\u6027\u7684\uff0c\u800c\u4e14\u5bf9\u4e8e\u793e\u4ea4\u5a92\u4f53\u53d7\u4f17\u6765\u8bf4\u5927\u591a\u662f\u9690\u5f62\u7684\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u7136\u800c\uff0c\u6b63\u662f\u8fd9\u4e9b\u52aa\u529b\u5f00\u542f\u4e86\u6301\u4e45\u7684\u53d8\u9769\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"what-dmd-associations-should-do-instead\" class=\"wp-block-heading\">DMD\u534f\u4f1a\u5e94\u8be5\u600e\u4e48\u505a\u5462\uff1f<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u5982\u679c\u76ee\u6807\u662f\u6539\u5584\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u60a3\u8005\u7684\u751f\u6d3b\uff0c\u90a3\u4e48\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u534f\u4f1a\u5e94\u8be5\u5c06\u66f4\u591a\u8d44\u6e90\u8f6c\u79fb\u5230\u5177\u6709\u53ef\u8861\u91cf\u5f71\u54cd\u7684\u4e3e\u63aa\u4e0a\u3002.<\/p>\n\n\n\n<h3 id=\"1-publish-annual-advocacy-impact-reports\" class=\"wp-block-heading\">1. \u53d1\u5e03\u5e74\u5ea6\u5021\u5bfc\u5f71\u54cd\u62a5\u544a<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u4e0e\u5176\u62a5\u544a\u66dd\u5149\u91cf\u548c\u4e92\u52a8\u91cf\uff0c\u4e0d\u5982\u53d1\u5e03\u53ef\u8861\u91cf\u7684\u6210\u679c\uff0c\u4f8b\u5982\u653f\u7b56\u4f1a\u8bae\u3001\u83b7\u5f97\u7684\u8d44\u91d1\u3001\u6269\u5927\u7684\u6cbb\u7597\u9014\u5f84\u4ee5\u53ca\u521b\u9020\u7684\u4e34\u5e8a\u8bd5\u9a8c\u673a\u4f1a\u3002\u4e86\u89e3\u66f4\u591a\uff1a <a href=\"https:\/\/dmdwarrior.com\/clinical-trials\/statistics\/\" target=\"_blank\" rel=\"noreferrer noopener\">DMD\u4e34\u5e8a\u8bd5\u9a8c\u7edf\u8ba1\u6570\u636e<\/a><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"2-build-strong-national-patient-registries\" class=\"wp-block-heading\">2. \u5efa\u7acb\u5f3a\u5927\u7684\u56fd\u5bb6\u60a3\u8005\u767b\u8bb0\u7cfb\u7edf<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u53ef\u9760\u7684\u60a3\u8005\u6570\u636e\u6709\u52a9\u4e8e\u7814\u7a76\u3001\u653f\u7b56\u89c4\u5212\u548c\u4e34\u5e8a\u8bd5\u9a8c\u62db\u52df\uff0c\u540c\u65f6\u8ba9\u653f\u5e9c\u66f4\u6e05\u695a\u5730\u4e86\u89e3\u56fd\u5bb6\u9700\u6c42\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"3-produce-independent-scientific-reviews\" class=\"wp-block-heading\">3. \u5f00\u5c55\u72ec\u7acb\u79d1\u5b66\u8bc4\u5ba1<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u5bb6\u5ead\u9700\u8981\u7684\u662f\u5bf9\u4e34\u5e8a\u8bd5\u9a8c\u3001\u5df2\u6279\u51c6\u7597\u6cd5\u3001\u5b89\u5168\u6027\u53d1\u73b0\u3001\u5c40\u9650\u6027\u548c\u5269\u4f59\u4e0d\u786e\u5b9a\u6027\u7684\u5e73\u8861\u5206\u6790\uff0c\u800c\u4e0d\u662f\u5ba3\u4f20\u6027\u7684\u603b\u7ed3\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"4-demand-greater-transparency-from-industry\" class=\"wp-block-heading\">4. \u8981\u6c42\u884c\u4e1a\u63d0\u9ad8\u900f\u660e\u5ea6<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">DMD\u534f\u4f1a\u5e94\u6301\u7eed\u8981\u6c42\u5168\u9762\u516c\u5e03\u5177\u6709\u4e34\u5e8a\u610f\u4e49\u7684\u6570\u636e\uff0c\u5305\u62ec\u529f\u80fd\u6027\u7ed3\u679c\u3001\u5b89\u5168\u6027\u53d1\u73b0\u3001\u751f\u7269\u6807\u5fd7\u7269\u7ed3\u679c\u548c\u957f\u671f\u968f\u8bbf\u6570\u636e\u3002\u4e86\u89e3\u66f4\u591a\uff1a <a href=\"https:\/\/dmdwarrior.com\/zh\/biomarkers-in-duchenne-muscular-dystrophy\/\" target=\"_blank\" rel=\"noreferrer noopener\">\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u7684\u751f\u7269\u6807\u5fd7\u7269<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u900f\u660e\u5ea6\u5bf9\u60a3\u8005\u3001\u4e34\u5e8a\u533b\u751f\u3001\u7814\u7a76\u4eba\u5458\u548c\u76d1\u7ba1\u673a\u6784\u90fd\u6709\u76ca\u5904\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"5-engage-policymakers-continuously\" class=\"wp-block-heading\">5. \u4e0e\u653f\u7b56\u5236\u5b9a\u8005\u6301\u7eed\u6c9f\u901a<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u5021\u5bfc\u5de5\u4f5c\u5e94\u8be5\u5305\u62ec\u5168\u5e74\u4e0e\u51b3\u7b56\u8005\u8fdb\u884c\u5b9a\u671f\u5bf9\u8bdd\uff0c\u800c\u4e0d\u662f\u5c06\u6d3b\u52a8\u96c6\u4e2d\u5728\u5ba3\u4f20\u65e5\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4eba\u9645\u5173\u7cfb\u6bd4\u5b64\u7acb\u7684\u7ade\u9009\u6d3b\u52a8\u66f4\u80fd\u6709\u6548\u5730\u5f71\u54cd\u653f\u7b56\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"6-publish-international-access-reports\" class=\"wp-block-heading\">6. \u53d1\u5e03\u56fd\u9645\u8bbf\u95ee\u62a5\u544a<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u57fa\u4e8e\u4ee5\u4e0b\u65b9\u9762\u6bd4\u8f83\u5404\u56fd\uff1a<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u6cbb\u7597\u65b9\u6848\u7684\u53ef\u53ca\u6027<\/li>\n\n\n\n<li>\u62a5\u9500\u72b6\u6001<\/li>\n\n\n\n<li>\u7b49\u5f85\u65f6\u95f4<\/li>\n\n\n\n<li>\u53c2\u4e0e\u4e34\u5e8a\u8bd5\u9a8c<\/li>\n\n\n\n<li>\u62a4\u7406\u6807\u51c6<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u516c\u4f17\u95ee\u8d23\u5236\u80fd\u591f\u4fc3\u8fdb\u8fdb\u6b65\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"7-invest-in-health-economics\" class=\"wp-block-heading\">7. \u6295\u8d44\u536b\u751f\u7ecf\u6d4e\u5b66<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u51c6\u5165\u51b3\u7b56\u8d8a\u6765\u8d8a\u4f9d\u8d56\u4e8e\u7ecf\u6d4e\u8bc1\u636e\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">DMD \u534f\u4f1a\u5e94\u59d4\u6258\u6216\u652f\u6301\u72ec\u7acb\u5206\u6790\uff0c\u4ee5\u8bc1\u660e\u53ca\u65f6\u8bca\u65ad\u3001\u591a\u5b66\u79d1\u62a4\u7406\u548c\u6709\u6548\u7597\u6cd5\u7684\u957f\u671f\u4ef7\u503c\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"8-create-international-advocacy-coalitions\" class=\"wp-block-heading\">8. \u521b\u5efa\u56fd\u9645\u5021\u5bfc\u8054\u76df<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">DMD\u534f\u4f1a\u4e0e\u5176\u5404\u81ea\u5f00\u5c55\u5168\u56fd\u6027\u8fd0\u52a8\uff0c\u4e0d\u5982\u534f\u8c03\u5236\u5b9a\u8054\u5408\u7684\u3001\u57fa\u4e8e\u8bc1\u636e\u7684\u653f\u7b56\u5efa\u8bae\uff0c\u5e76\u540c\u65f6\u63d0\u4ea4\u7ed9\u591a\u4e2a\u56fd\u5bb6\u7684\u76d1\u7ba1\u673a\u6784\u548c\u653f\u5e9c\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"9-define-success-before-every-campaign\" class=\"wp-block-heading\">9. \u5728\u6bcf\u6b21\u6d3b\u52a8\u524d\u5b9a\u4e49\u6210\u529f\u6807\u51c6<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u6240\u6709\u5021\u5bfc\u6d3b\u52a8\u90fd\u5e94\u8be5\u4ece\u4e00\u4e2a\u95ee\u9898\u5f00\u59cb\uff1a<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u8fd9\u9879\u8fd0\u52a8\u5e94\u8be5\u5e26\u6765\u54ea\u4e9b\u53ef\u8861\u91cf\u7684\u6539\u53d8\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5982\u679c\u7b54\u6848\u65e0\u6cd5\u660e\u786e\u754c\u5b9a\uff0c\u5219\u5e94\u91cd\u65b0\u8003\u8651\u8be5\u6d3b\u52a8\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 id=\"10-use-social-media-as-a-tool-not-the-mission\" class=\"wp-block-heading\">10. \u5c06\u793e\u4ea4\u5a92\u4f53\u4f5c\u4e3a\u5de5\u5177\uff0c\u800c\u975e\u5176\u76ee\u7684\u3002<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u793e\u4ea4\u5a92\u4f53\u4ecd\u7136\u662f\u6559\u80b2\u3001\u793e\u533a\u5efa\u8bbe\u3001\u7b79\u6b3e\u548c\u5206\u4eab\u79d1\u5b66\u53d1\u5c55\u6210\u679c\u7684\u7edd\u4f73\u5e73\u53f0\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4f46\u662f\uff0c\u5b83\u5e94\u8be5\u589e\u5f3a\u6210\u529f\u7684\u5021\u5bfc\u6548\u679c\uff0c\u800c\u4e0d\u662f\u53d6\u4ee3\u5b83\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8bdd\u9898\u6807\u7b7e\u5e94\u8be5\u7528\u6765\u4f20\u8fbe\u6210\u5c31\uff0c\u800c\u4e0d\u662f\u6210\u4e3a\u6210\u5c31\u672c\u8eab\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"the-future-of-duchenne-advocacy\" class=\"wp-block-heading\">\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5021\u5bfc\u7684\u672a\u6765<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u5728\u8fc7\u53bb\u7684\u4e8c\u5341\u5e74\u91cc\uff0c\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u60a3\u8005\u7fa4\u4f53\u53d6\u5f97\u4e86\u975e\u51e1\u7684\u8fdb\u6b65\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u79d1\u5b66\u521b\u65b0\u6b63\u5728\u52a0\u901f\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u57fa\u56e0\u7597\u6cd5\u3001\u5916\u663e\u5b50\u8df3\u8dc3\u7597\u6cd5\u3001\u57fa\u56e0\u7f16\u8f91\u548c\u5176\u4ed6\u65b0\u5174\u65b9\u6cd5\u4e0d\u65ad\u91cd\u5851\u4eba\u4eec\u5bf9\u672a\u6765\u7684\u671f\u671b\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5021\u5bfc\u5de5\u4f5c\u4e5f\u5fc5\u987b\u4ee5\u540c\u6837\u7684\u901f\u5ea6\u53d1\u5c55\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">DMD\u534f\u4f1a\u5e94\u8be5\u8d85\u8d8a\u4ee5\u77e5\u540d\u5ea6\u6765\u8861\u91cf\u6210\u529f\uff0c\u8f6c\u800c\u91c7\u7528\u53ef\u8861\u91cf\u7684\u3001\u4ee5\u60a3\u8005\u4e3a\u4e2d\u5fc3\u7684\u7ed3\u679c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u60a3\u6709\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u7684\u5bb6\u5ead\u4e0d\u9700\u8981\u66f4\u591a\u7684\u70ed\u95e8\u8bdd\u9898\u6807\u7b7e\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4ed6\u4eec\u9700\u8981\u66f4\u5feb\u7684\u8bca\u65ad\u7ed3\u679c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u66f4\u9ad8\u7684\u533b\u7597\u670d\u52a1\u6807\u51c6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u63d0\u9ad8\u900f\u660e\u5ea6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u66f4\u591a\u4e34\u5e8a\u8bd5\u9a8c\u673a\u4f1a\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4ee5\u53ef\u8d1f\u62c5\u7684\u4ef7\u683c\u83b7\u5f97\u5df2\u6279\u51c6\u7684\u7597\u6cd5\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u4e9b\u662f\u6210\u529f\u5021\u5bfc\u6240\u5e94\u53d6\u5f97\u7684\u6210\u679c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5176\u4ed6\u4e00\u5207\u90fd\u5e94\u670d\u52a1\u4e8e\u8fd9\u4e9b\u76ee\u6807\uff0c\u800c\u4e0d\u662f\u53d6\u4ee3\u5b83\u4eec\u3002.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 id=\"conclusion\" class=\"wp-block-heading\">\u7ed3\u8bba<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u5e76\u975e\u6240\u6709DMD\u534f\u4f1a\u90fd\u91c7\u7528\u76f8\u540c\u7684\u65b9\u6cd5\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8bb8\u591a\u7ec4\u7ec7\u6295\u5165\u5927\u91cf\u65f6\u95f4\u3001\u4e13\u4e1a\u77e5\u8bc6\u548c\u8d44\u6e90\u8fdb\u884c\u5021\u5bfc\uff0c\u771f\u6b63\u6539\u5584\u60a3\u8005\u7684\u751f\u6d3b\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u7136\u800c\uff0c\u53e6\u4e00\u4e9b\u4eba\u4ecd\u7136\u4e25\u91cd\u4f9d\u8d56\u793e\u4ea4\u5a92\u4f53\u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\uff0c\u4f46\u8fd9\u4e9b\u6d3b\u52a8\u5f88\u5c11\u4ea7\u751f\u53ef\u8861\u91cf\u7684\u7ed3\u679c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5bf9\u4e8e\u5bb6\u5ead\u800c\u8a00\uff0c\u53c2\u4e0e\u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\u53ef\u4ee5\u5e26\u6765\u56e2\u7ed3\u3001\u5e0c\u671b\u548c\u53c2\u4e0e\u611f\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u8fd9\u5176\u4e2d\u8574\u542b\u7740\u4ef7\u503c\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u4f46\u5355\u51ed\u5e0c\u671b\u65e0\u6cd5\u6539\u53d8\u533b\u7597\u653f\u7b56\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u70ed\u95e8\u8bdd\u9898\u6807\u7b7e\u5e76\u4e0d\u4ee3\u8868\u67d0\u79cd\u7597\u6cd5\u83b7\u5f97\u8ba4\u53ef\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u75c5\u6bd2\u5f0f\u4f20\u64ad\u7684\u5e16\u5b50\u5e76\u4e0d\u4f1a\u6269\u5927\u62a5\u9500\u8303\u56f4\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u6210\u5343\u4e0a\u4e07\u6761\u5185\u5bb9\u76f8\u540c\u7684\u63a8\u6587\u5e76\u4e0d\u80fd\u6d88\u9664\u6cbb\u7597\u969c\u788d\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5728\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u4e2d\uff0c\u65f6\u95f4\u5c31\u662f\u808c\u8089\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u6bcf\u82b1\u4e00\u4e2a\u6708\u65f6\u95f4\u5e86\u795d\u7ebf\u4e0a\u4e92\u52a8\u5374\u6ca1\u6709\u53d6\u5f97\u4efb\u4f55\u53ef\u8861\u91cf\u7684\u8fdb\u5c55\uff0c\u60a3\u8005\u5c31\u4f1a\u7ee7\u7eed\u5931\u53bb\u4e00\u4e2a\u6708\u6c38\u8fdc\u65e0\u6cd5\u6062\u590d\u7684\u808c\u8089\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5021\u5bfc\u5de5\u4f5c\u7edd\u4e0d\u80fd\u5c06\u77e5\u540d\u5ea6\u4e0e\u6709\u6548\u6027\u6df7\u4e3a\u4e00\u8c08\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u4e5f\u4e0d\u5e94\u9f13\u52b1\u60a3\u8005\u8ba4\u4e3a\u4ec5\u9760\u7f51\u7edc\u6d3b\u52a8\u5c31\u80fd\u53d6\u5f97\u6709\u610f\u4e49\u7684\u8fdb\u6b65\u3002.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5982\u679c\u8fd9\u7bc7\u6587\u7ae0\u8ba9\u67d0\u4e9b\u673a\u6784\u611f\u5230\u4e0d\u8212\u670d\uff0c\u8fd9\u79cd\u4e0d\u8212\u670d\u4e0d\u5e94\u88ab\u81ea\u52a8\u89c6\u4e3a\u4e0d\u516c\u5e73\u7684\u6279\u8bc4\u800c\u4e88\u4ee5\u5ffd\u89c6\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u76f8\u53cd\uff0c\u5b83\u5e94\u8be5\u88ab\u89c6\u4e3a\u4e00\u6b21\u8fdb\u884c\u771f\u8bda\u53cd\u601d\u7684\u673a\u4f1a\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u6bcf\u4e2a\u5021\u5bfc\u7ec4\u7ec7\u90fd\u5e94\u8be5\u51c6\u5907\u597d\u56de\u7b54\u4e00\u4e2a\u7b80\u5355\u7684\u95ee\u9898\uff1a<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5728\u4f60\u4eec\u6700\u8fd1\u4e00\u6b21\u8bdd\u9898\u6807\u7b7e\u6d3b\u52a8\u4e4b\u540e\uff0c\u60a3\u8005\u5b9e\u9645\u83b7\u5f97\u4e86\u54ea\u4e9b\u53ef\u8861\u91cf\u7684\u6210\u679c\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u83b7\u5f97\u6cbb\u7597\u7684\u673a\u4f1a\u662f\u5426\u6709\u6240\u6539\u5584\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u62a5\u9500\u653f\u7b56\u6709\u53d8\u5316\u5417\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u653f\u5e9c\u662f\u5426\u4fee\u6539\u4e86\u533b\u7597\u4fdd\u5065\u653f\u7b56\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u662f\u5426\u6709\u66f4\u591a\u60a3\u8005\u53c2\u4e0e\u4e34\u5e8a\u8bd5\u9a8c\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u900f\u660e\u5ea6\u63d0\u9ad8\u4e86\u5417\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u5982\u679c\u8fd9\u4e9b\u95ee\u9898\u65e0\u6cd5\u7528\u786e\u51ff\u7684\u8bc1\u636e\u6765\u56de\u7b54\uff0c\u6216\u8bb8\u5e94\u8be5\u6362\u4e2a\u95ee\u9898\u6765\u95ee\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u6211\u4eec\u662f\u5426\u4ee5\u793e\u4ea4\u5a92\u4f53\u4e92\u52a8\u91cf\u6765\u8861\u91cf\u6210\u529f\u2026\u2026<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u8fd8\u662f\u901a\u8fc7\u6539\u5584\u60a3\u8005\u7684\u751f\u6d3b\u8d28\u91cf\uff1f<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u675c\u6c0f\u808c\u8425\u517b\u4e0d\u826f\u75c7\u60a3\u8005\u7fa4\u4f53\u9700\u8981\u7684\u4e0d\u4ec5\u4ec5\u662f\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u7684\u5021\u5bfc\u3002.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u56e0\u4e3a\u5728\u6bcf\u6b21\u6d3b\u52a8\u7ed3\u675f\u65f6\uff0c\u95ee\u9898\u7edd\u4e0d\u5e94\u8be5\u662f\u201c\u6709\u591a\u5c11\u4eba\u53d1\u5e16\uff1f\u201d\u800c\u5e94\u8be5\u662f\u201c\u6709\u591a\u5c11\u4eba\u7684\u751f\u6d3b\u5f97\u5230\u4e86\u6539\u5584\uff1f\u201d<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u4e86\u89e3\u66f4\u591a<\/strong>: <a href=\"https:\/\/dmdwarrior.com\/zh\/dmd-associations-failure-treatment-access\/\" target=\"_blank\" rel=\"noreferrer noopener\">DMD\u534f\u4f1a\u7684\u7cfb\u7edf\u6027\u5931\u8d25<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Every year, dozens of Duchenne muscular dystrophy (DMD) associations organize social media campaigns encouraging families and supporters to share hashtags on platforms such as X (formerly Twitter), Instagram, Facebook, and LinkedIn. DMD associations celebrate campaigns that generate 60,000 or even 100,000 hashtag posts as major advocacy successes. Yet the number of social media posts is [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":8343,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[282],"tags":[860,229,863,865,864,861,230,862],"class_list":["post-8335","post","type-post","status-publish","format-standard","has-post-thumbnail","category-editorials","tag-dmd-advocacy","tag-dmd-associations","tag-dmd-hashtag-campaigns","tag-dmd-patient-advocacy","tag-dmd-social-media-campaigns","tag-duchenne-advocacy","tag-duchenne-associations","tag-rare-disease-advocacy"],"_links":{"self":[{"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/posts\/8335","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/comments?post=8335"}],"version-history":[{"count":15,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/posts\/8335\/revisions"}],"predecessor-version":[{"id":8351,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/posts\/8335\/revisions\/8351"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/media\/8343"}],"wp:attachment":[{"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/media?parent=8335"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/categories?post=8335"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dmdwarrior.com\/zh\/wp-json\/wp\/v2\/tags?post=8335"}],"curies":[{"name":"\u53ef\u6e7f\u6027\u7c89\u5242","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}