{"id":2341,"date":"2018-11-18T21:09:52","date_gmt":"2018-11-19T03:09:52","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2341"},"modified":"2018-11-18T21:09:52","modified_gmt":"2018-11-19T03:09:52","slug":"lgmd-organization-gfb-onlus","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"\u7ec4\u7ec7\uff1aGFB ONLUS"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/11\/GFB-Onlus.png\" alt=\"\" class=\"lazyload wp-image-2340\"\/><\/figure>\n\n\n<p><strong>\u7ec4\u7ec7\u540d\u79f0<\/strong>:          GFB ONLUS\uff08GRUPPO FAMILIANARI BETA-SARCOGLICANOPATIE ONLUS\uff09\u3002<\/p>\n<p><strong>\u7f51\u7ad9\uff1a<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"http:\/\/www.beta-sarcoglicanopathy.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">www.lgmd2e.org<\/a><\/p>\n<p><strong>FACEBOOK\uff1a\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/www.facebook.com\/gfbonlus-1045732368903903\" target=\"_blank\" rel=\"noopener noreferrer\">www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n<p><strong>TWITTER\uff1a\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/twitter.com\/gfbonlus\" target=\"_blank\" rel=\"noopener noreferrer\">twitter.com\/gfbonlus<\/a><\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u4fa7\u91cd\u4e8e\u54ea\u79cd lgmd \u5b50\u7c7b\u578b\uff1a\u00a0 <\/strong><\/p>\n<p>\u6211\u4eec\u5173\u6ce8\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7 2E \u578b (LGMD2E)<\/p>\n<p><strong>\u5982\u679c\u60a8\u4e13\u6ce8\u4e8e\u67d0\u4e00\u4e9a\u578b\uff0c\u662f\u5426\u6709\u767b\u8bb0\u5904\uff0c\u60a3\u8005\u5982\u4f55\u52a0\u5165\uff1f <\/strong><\/p>\n<p>\u5728\u6211\u4eec\u7684\u7f51\u7ad9\u4e0a\uff0c\u6211\u4eec\u6839\u636e\u300a\u9690\u79c1\u6cd5\u300b\u6536\u96c6\u6709\u5173 Lgmd2E- Lgmd2D- Lgmd2C - Lgmd2F \u60a3\u8005\u7684\u4fe1\u606f\u3002\u6211\u4eec\u7684\u9996\u8981\u76ee\u6807\u662f\u7f16\u5236\u7edf\u8ba1\u6570\u636e\uff0c\u5176\u6b21\u662f\u5efa\u7acb\u808c\u7cd6\u86cb\u767d\u75c5\u60a3\u8005\u767b\u8bb0\u518c\u3002<\/p>\n<p>\u5728\u8fd9\u91cc\uff0c\u60a8\u53ef\u4ee5\u9605\u8bfb\u6211\u4eec\u7684\u60a3\u8005\u7edf\u8ba1\u8d44\u6599\uff1a<br \/>http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&amp;view=article&amp;id=47&amp;Itemid=53<\/p>\n<p>\u76ee\u524d\uff0cGFB \u5171\u6536\u5f55\u4e86 403 \u540d\u8089\u6837\u7c98\u591a\u7cd6\u75c5\uff08LGMD2C -2D - 2E -2F\uff09\u60a3\u8005\u3002\u6211\u4eec\u9080\u8bf7\u6709\u5176\u4ed6\u4fe1\u606f\u9700\u8981\u5206\u4eab\u7684\u4eba\u901a\u8fc7\u4ee5\u4e0b\u65b9\u5f0f\u5c06\u8fd9\u4e9b\u4fe1\u606f\u53d1\u9001\u7ed9\u6211\u4eec <a href=\"mailto:info@beta-sarcoglicanopatie.it\" target=\"_blank\" rel=\"noopener noreferrer\">info@beta-sarcoglicanopatie.it<\/a> .<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u662f\u975e\u8425\u5229\u7ec4\u7ec7\u5417\uff1f\u5982\u679c\u662f\uff0c\u662f\u4ec0\u4e48\u7c7b\u578b\uff1f\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>\u662f\u7684\uff0c\u6211\u4eec\u662f\u4e00\u5bb6\u975e\u8425\u5229\u7ec4\u7ec7\u30022013 \u5e74 2 \u6708 27 \u65e5\uff0cGFB Onlus \u4f5c\u4e3a\u4e00\u4e2a\u5fd7\u613f\u7ec4\u7ec7\u5728\u610f\u5927\u5229\u6b63\u5f0f\u6210\u7acb\uff0c\u5e76\u5728\u4f26\u5df4\u7b2c\u5927\u533a\u5fd7\u613f\u7ec4\u7ec7\u767b\u8bb0\u5904\u7701\u7ea7\u5206\u90e8\u767b\u8bb0\uff0c\u7f16\u53f7\u4e3a SO-81\u30022014 \u5e74\uff0c\u5b83\u8fd8\u88ab\u5217\u5165\u5bb6\u5ead\u56e2\u7ed3\u534f\u4f1a\u5730\u533a\u767b\u8bb0\u518c n.947\u3002<\/p>\n<p><strong>\u521b\u5efa\u8d35\u7ec4\u7ec7\u7684\u7075\u611f\u6765\u6e90<\/strong>:<\/p>\n<p>\u591a\u5e74\u6765\uff0c\u6211\u4eec\u7ecf\u5386\u4e86\u5b69\u5b50\u60a3\u75c5\u7684\u8fc7\u7a0b\uff0c\u4f46\u6211\u4eec\u610f\u8bc6\u5230\uff0c\u5728 2012 \u5e74\u4e4b\u524d\uff0c\u8fd8\u6ca1\u6709\u9488\u5bf9\u8fd9\u79cd\u75be\u75c5\u7684\u7cbe\u786e\u79d1\u5b66\u7814\u7a76\u548c\u6cbb\u7597\u65b9\u6cd5\u3002\u6211\u4eec\u5b8c\u5168\u5b64\u7acb\u65e0\u63f4\uff0c\u6b64\u5916\uff0c\u4e5f\u6ca1\u6709\u4e0e Lgmd2E \u76f8\u5173\u7684\u534f\u4f1a\u3002<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u7684\u4f7f\u547d\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p>\u521b\u5efa Gfb Onlus \u7684\u76ee\u7684\u662f\u4e3a\u4e86\u8d44\u52a9\u65e8\u5728\u6cbb\u7597\u8be5\u75be\u75c5\u7684\u7814\u7a76\u9879\u76ee\u3002\u5b83\u8fd8\u5e0c\u671b\u6210\u4e3a\u4e00\u79cd\u65b9\u5f0f\uff0c\u8ba9\u6211\u4eec\/\u60a8\u66f4\u597d\u5730\u4e86\u89e3\u4e0d\u6613\u627e\u5230\u7684\u4fe1\u606f\/\u65b0\u95fb\uff0c\u4ee5\u53ca\u9488\u5bf9\u8fd9\u79cd\u7279\u6b8a\u75be\u75c5\u7684\u6700\u65b0\u5177\u4f53\u7814\u7a76\u6d3b\u52a8\u3002\u6211\u4eec\u7684\u4f7f\u547d\u662f\u4ee3\u8868 Lgmd2E \u60a3\u8005\uff0c\u4e0e\u673a\u6784\u3001\u7814\u7a76\u7ec4\u7ec7\u3001\u5176\u4ed6\u534f\u4f1a\u548c\u60a3\u8005\u6c9f\u901a\u3002\u8fd9\u4e2a\u89d2\u8272\u81f3\u4eca\u53ea\u7531\u6211\u4eec\u4e00\u4e2a\u4eba\u627f\u62c5\uff0c\u56e0\u4e3a\u65e0\u8bba\u662f\u5728\u610f\u5927\u5229\u8fd8\u662f\u5728\u56fd\u5916\uff0c\u90fd\u6ca1\u6709\u5176\u4ed6\u56e2\u4f53\u4e0e\u6211\u4eec\u6709\u7740\u540c\u6837\u7684\u5b97\u65e8\u3002\u521b\u5efa\u672c\u7f51\u7ad9\u53ca\u5176\u4e92\u52a9\u5c0f\u7ec4\u7684\u521d\u8877\u662f\u5e0c\u671b\u4e0e\u5176\u4ed6\u53d7\u6b64\u75be\u75c5\u5f71\u54cd\u7684\u5bb6\u5ead\u53d6\u5f97\u8054\u7cfb\uff0c\u4ece\u800c\u5206\u4eab\u6bcf\u5929\u4e0e\u6b64\u75be\u75c5\u751f\u6d3b\u5728\u4e00\u8d77\u7684\u65b9\u65b9\u9762\u9762\uff0c\u4ee5\u53ca\u4e0e\u79d1\u5b66\u7814\u7a76\u548c\u5404\u79cd\u8f85\u52a9\u5de5\u5177\u7684\u4f7f\u7528\u76f8\u5173\u7684\u4e34\u5e8a\u3001\u6cd5\u5f8b\u3001\u540e\u52e4\u548c\u7ec4\u7ec7\u65b9\u9762\u7684\u60c5\u51b5\u3002\u6211\u4eec\u7684\u76ee\u7684\u662f\u9996\u6b21\u6536\u96c6\u8fd9\u4e9b\u60a3\u8005\u7684\u6570\u636e\uff0c\u4ee5\u4fbf\u5c06\u6765\u8fdb\u884c\u60a3\u8005\u767b\u8bb0\u548c\u5177\u4f53\u7684\u4e34\u5e8a\u8bd5\u9a8c\u3002<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u63d0\u4f9b\u54ea\u4e9b\u670d\u52a1\uff1f<\/strong><\/p>\n<p>2012:\u81ea 2012 \u5e74 8 \u6708\u8d77\uff0cGFB \u7684\u5bb6\u4eba\u51b3\u5b9a\u5411\u4fc4\u4ea5\u4fc4\u5dde\u54e5\u4f26\u5e03\u5e02\u7684 LGMD2E \u57fa\u56e0\u6cbb\u7597\u9879\u76ee\u63d0\u4f9b\u7b2c\u4e00\u7b14\u8d44\u91d1\uff0c\u8be5\u9879\u76ee\u7531 J. Mendell \u6559\u6388\u8d1f\u8d23\u3002J. Mendell \u6559\u6388\u7684 LGMD2E \u57fa\u56e0\u6cbb\u7597\u9879\u76ee\u3002\u81f3\u4eca\u5df2\u652f\u4ed8\u4e86\u4e94\u7b14\u6b3e\u9879\uff0c\u5171\u8ba1 $ 130 \u4e07\u7f8e\u5143\u30022017:Myonexus Therapeutics \u516c\u53f8\u8bde\u751f\uff0cGFB ONLUS \u52a0\u5165\u8be5\u516c\u53f8\u3002Myonexus Therapeutics \u516c\u53f8\u7684\u76ee\u6807\u662f\u5f00\u53d1 2B\u30012C\u30012D\u30012E \u548c 2L \u578b\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff08LGMD\uff09\u7684\u57fa\u56e0\u7597\u6cd5\u3002http:\/\/myonexustx.com\/ 2018\uff1aGFB Onlus \u53c2\u52a0\u4e86 Sarepta \u548c Myonexus \u8fd9\u4e24\u5bb6\u603b\u90e8\u4f4d\u4e8e\u7f8e\u56fd\u7684\u751f\u7269\u6280\u672f\u516c\u53f8\u4e4b\u95f4\u7684\u534f\u8bae\u7b7e\u7f72\u4eea\u5f0f\u3002\u6211\u4eec\u7684\u5176\u4ed6\u6d3b\u52a8\u8fd8\u5305\u62ec\uff1a\u7ec4\u7ec7\u6b8b\u75be\u4eba\u4f7f\u7528\u767b\u5c71\u6905\u548c\u5176\u4ed6\u4f53\u80b2\uff08\u5929\u7a7a\uff09\u548c\u5a31\u4e50\u6d3b\u52a8\u8fdb\u884c\u767b\u5c71\u65c5\u884c\uff1b\u7ec4\u7ec7 GFB ONLUS \u5bb6\u5ead\u5e74\u4f1a\uff1b\u901a\u8fc7\u4e0e\u516c\u5171\u673a\u6784\u7b7e\u8ba2\u534f\u8bae\u4e3a\u6b8b\u75be\u4eba\u63d0\u4f9b\u4ea4\u901a\u670d\u52a1\uff1b\u7ec4\u7ec7 LGMD2E \u548c\u5176\u4ed6\u808c\u9499\u86cb\u767d\u75c5\u56fd\u9645\u79d1\u5b66\u5927\u4f1a\uff1b\u4e3a\u6b8b\u75be\u4eba\u63d0\u4f9b\u5fc3\u7406\u652f\u6301\u3002<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u6700\u5f15\u4ee5\u4e3a\u8c6a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p>\u8d44\u52a9\u7531 J. Mendell \u6559\u6388\u5728\u7f8e\u56fd\u4fc4\u4ea5\u4fc4\u5dde\u54e5\u4f26\u5e03\u5e02\u534f\u8c03\u7684 Lgmd2e \u57fa\u56e0\u6cbb\u7597\u9879\u76ee\u7684\u4e34\u5e8a\u524d\u9636\u6bb5\uff08$ 130 \u4e07\u7f8e\u5143\uff09\uff0c\u53c2\u4e0e Myonexus Therapeutics \u9879\u76ee\u4ee5\u53ca Sarepta \u4e0e Myonexus \u4e4b\u95f4\u7684\u534f\u8bae\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3\u8d35\u7ec4\u7ec7\u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u6211\u4eec\u6b63\u5728\u5efa\u7acb\u8fd9\u65b9\u9762\u7684\u826f\u597d\u5173\u7cfb\uff0c\u6211\u4eec\u5e0c\u671b\u5efa\u7acb\u4e00\u4e2a\u767b\u8bb0\u518c\uff0c\u4ee5\u4fbf\u5728\u4e34\u5e8a\u8bd5\u9a8c\u51c6\u5907\u5c31\u7eea\u65f6\u4e3a\u6211\u4eec\u63d0\u4f9b\u5e2e\u52a9\u3002<\/p>\n<p><strong>\u4eba\u4eec\u5982\u4f55\u53c2\u4e0e\u652f\u6301\u8d35\u7ec4\u7ec7\uff1a<\/strong><\/p>\n<p>\u6211\u4eec\u7684\u7f51\u7ad9\u5c06\u63d0\u4f9b\u4e0e\u6211\u4eec\u8054\u7cfb\u7684\u4fe1\u606f\uff0c\u5e76\u6700\u7ec8\u63d0\u4f9b\u514d\u7a0e\u6350\u6b3e\u3002<\/p>\n<p><strong>\u8054\u7cfb\u8d35\u7ec4\u7ec7\u7684\u6700\u4f73\u65b9\u5f0f\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p>\u8bf7\u53d1\u9001\u7535\u5b50\u90ae\u4ef6\u81f3 <a href=\"mailto:info@beta-sarcoglicanopatie.it\" target=\"_blank\" rel=\"noopener noreferrer\">info@beta-sarcoglicanopatie.it<\/a> .\u8bf7\u968f\u65f6\u8054\u7cfb\u6211\u4eec\u3002\u60a8\u4e5f\u53ef\u4ee5\u968f\u65f6\u901a\u8fc7 Facebook \u6216 Twitter \u7ed9\u6211\u4eec\u7559\u8a00\u3002<\/p>\n<p><strong>\u60a8\u8fd8\u6709\u4ec0\u4e48\u8981\u8865\u5145\u7684\u5417\uff1f<\/strong><\/p>\n<p>\u6211\u4eec\u671f\u5f85\u7740\u6210\u529f\u6cbb\u6108\u548c\u6cbb\u7597 LGMD2E \u548c\u5176\u4ed6 lgmd \u4e9a\u578b\u3002<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS) [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2340,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,62,95],"tags":[],"class_list":["post-2341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2e","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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