{"id":3342,"date":"2019-12-27T14:48:00","date_gmt":"2019-12-27T20:48:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3342"},"modified":"2021-02-19T18:34:05","modified_gmt":"2021-02-19T18:34:05","slug":"organization-cure-vcp","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"\u7ec4\u7ec7\uff1aCure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

\u7ec4\u7ec7\u540d\u79f0<\/strong>: Cure VCP Disease, Inc.<\/p>\n

\u7f51\u7ad9\uff1a<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

FACEBOOK\uff1a\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

TWITTER\uff1a\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> @LostTexanInGA<\/p>\n

\u8d35\u7ec4\u7ec7\u4fa7\u91cd\u4e8e\u54ea\u79cd lgmd \u5b50\u7c7b\u578b\uff1a\u00a0 <\/strong>\u00a0<\/p>\n

VCP \u75be\u75c5\uff0c\u7279\u522b\u662f\u4e0e\u5e15\u5409\u7279\u6c0f\u9aa8\u75c5\u548c\u989d\u989e\u53f6\u75f4\u5446\u76f8\u5173\u7684\u5305\u6db5\u4f53\u808c\u75c5\uff08IBMPFD\uff09\u3002\u00a0<\/p>\n

\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

https:\/\/www.curevcp.org\/patient-registry<\/a><\/p>\n

\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

\u00a0 \u662f\uff0c\u6211\u4eec\u662f 501(c)(3) \u516c\u5171\u975e\u8425\u5229\u7ec4\u7ec7<\/p>\n

\u521b\u5efa\u8d35\u7ec4\u7ec7\u7684\u7075\u611f\u6765\u6e90<\/strong>:<\/p>\n

\u00a0\u5f53\u65f6\u8fd8\u6ca1\u6709\u4e00\u4e2a\u6b63\u5f0f\u7684\u7ec4\u7ec7\u6765\u7ec4\u7ec7\u60a3\u8005\u548c\u7814\u7a76\u4eba\u5458\uff0c\u5e76\u63d0\u9ad8\u4ed6\u4eec\u5bf9 VCP \u75be\u75c5\u7684\u8ba4\u8bc6\u3002 \u6211\u81ea\u5df1\u4e5f\u662f\u4e00\u540d\u60a3\u8005\uff0c\u6211\u7684\u6bcd\u4eb2\u56e0\u75c5\u53bb\u4e16\uff0c\u6211\u89c9\u5f97\u81ea\u5df1\u4e0d\u80fd\u8896\u624b\u65c1\u89c2\uff0c\u7b49\u5f85\u548c\u5bc4\u5e0c\u671b\u4e8e\u7814\u7a76\u754c\u7684\u53d1\u5c55\u3002 \u4f5c\u4e3a\u60a3\u8005\u7fa4\u4f53\uff0c\u6211\u4eec\u9700\u8981\u79ef\u6781\u53c2\u4e0e\uff0c\u63a8\u52a8\u53d6\u5f97\u79ef\u6781\u6210\u679c\uff0c\u4f46\u6700\u91cd\u8981\u7684\u662f\u786e\u5b9a\u60a3\u8005\u7fa4\u4f53\u3002\u00a0<\/p>\n

\u8d35\u7ec4\u7ec7\u7684\u4f7f\u547d\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n

Cure VCP Disease, Inc.\u7684\u6210\u7acb\u65e8\u5728\u63a8\u52a8\u6cbb\u7597\u4e0e\u542b\u7f2c\u6c28\u9178\u86cb\u767d\u57fa\u56e0\u7a81\u53d8\u76f8\u5173\u75be\u75c5\u7684\u5de5\u4f5c\u3002 \u5176\u4e2d\u5305\u62ec\u5305\u6db5\u4f53\u808c\u75c5\uff08Inclusion Body Myopathy associated with Paget's disease of bone and Frontotemporal Dementia\uff0cIBMPFD\uff09\u3002 \u6211\u4eec\u7684\u76ee\u6807\u662f\u5411\u533b\u751f\u3001\u7814\u7a76\u4eba\u5458\u3001\u6295\u8d44\u8005\u3001\u60a3\u8005\u3001\u62a4\u7406\u4eba\u5458\u548c\u666e\u901a\u5927\u4f17\u63d0\u4f9b\u6709\u5173 VCP \u75be\u75c5\u7684\u5168\u7403\u6559\u80b2\u548c\u5ba3\u4f20\u3002<\/p>\n

\u8d35\u7ec4\u7ec7\u63d0\u4f9b\u54ea\u4e9b\u670d\u52a1\uff1f<\/strong><\/p>\n

\u00a0\u6211\u4eec\u4e3a VCP \u75be\u75c5\u60a3\u8005\u5efa\u7acb\u4e86\u5168\u7403\u60a3\u8005\u767b\u8bb0\u518c\u3002 \u6211\u4eec\u901a\u8fc7\u4f1a\u8bae\u3001\u7535\u5b50\u90ae\u4ef6\u901a\u8baf\u3001\u5728\u7ebf\u8d44\u6e90\u548c\u7f51\u7edc\u7814\u8ba8\u4f1a\u4e3a\u60a3\u8005\u63d0\u4f9b\u5e0c\u671b\u548c\u6559\u80b2\u3002<\/p>\n

\u8d35\u7ec4\u7ec7\u6700\u5f15\u4ee5\u4e3a\u8c6a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n

\u00a0\u6211\u4eec\u4e8e 2018 \u5e74 1 \u6708\u542f\u52a8\uff0c\u5e76\u4e8e 2019 \u5e74 4 \u6708\u4e3e\u529e\u4e86\u9996\u5c4a VCP \u75be\u75c5\u60a3\u8005\u548c\u62a4\u7406\u4eba\u5458\u5927\u4f1a\u3002 \u7ea6\u6709 60 \u540d\u60a3\u8005\u3001\u62a4\u7406\u4eba\u5458\u548c\u7814\u7a76\u4eba\u5458\u53c2\u52a0\u4e86\u4f1a\u8bae\u3002 \u6240\u6709\u5f55\u5236\u7684\u4f1a\u8bae\u5747\u53ef\u5728\u6211\u4eec\u7684 \"\u6cbb\u6108 VCP \u75be\u75c5 \"YouTube \u9891\u9053\u4e0a\u89c2\u770b\u3002<\/p>\n

\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3\u8d35\u7ec4\u7ec7\u7684\u54ea\u4e9b\u65b9\u9762<\/strong>:<\/p>\n

\u00a0\u6211\u4eec\u7684\u8bb8\u591a\u60a3\u8005\u88ab\u8bef\u8bca\u4e3a LGMD \u6216\u5305\u6db5\u4f53\u808c\u708e\u3002 \u5bf9\u4e8e\u8bb8\u591a\u795e\u7ecf\u808c\u8089\u75be\u75c5\u60a3\u8005\u6765\u8bf4\uff0c\u83b7\u5f97\u6b63\u786e\u8bca\u65ad\u7684\u8fc7\u7a0b\u53ef\u80fd\u662f\u5145\u6ee1\u538b\u529b\u7684\u3002 \u6211\u4eec\u7684\u76ee\u6807\u662f\u4e0e\u6240\u6709\u6210\u4eba\u53d1\u75c5\u578b\u795e\u7ecf\u808c\u8089\u7ec4\u7ec7\u5408\u4f5c\uff0c\u63d0\u9ad8\u4eba\u4eec\u7684\u8ba4\u8bc6\uff0c\u5f00\u5c55\u6559\u80b2\u548c\u6700\u4f73\u5b9e\u8df5\u3002 \u6211\u4eec\u90fd\u9762\u4e34\u7740\u8bb8\u591a\u76f8\u540c\u7684\u75be\u75c5\u6311\u6218\uff0c\u5c3d\u7ba1\u75be\u75c5\u7684\u79d1\u5b66\u539f\u7406\u53ef\u80fd\u4e0d\u540c\uff0c\u4f46\u6211\u4eec\u5fc5\u987b\u540c\u821f\u5171\u6d4e\u3002<\/p>\n

\u4eba\u4eec\u5982\u4f55\u53c2\u4e0e\u652f\u6301\u8d35\u7ec4\u7ec7\uff1a<\/strong><\/p>\n

\u00a0\u6211\u4eec\u6b63\u8bd5\u56fe\u521b\u5efa\u4e00\u4e2a\u5927\u4f7f\u8ba1\u5212\uff0c\u5411\u60a3\u8005\u3001\u62a4\u7406\u4eba\u5458\u548c\u79d1\u5b66\u754c\u8fdb\u884c\u5ba3\u4f20\u3002 \u6211\u4eec\u5e76\u4e0d\u4e86\u89e3 VCP \u75be\u75c5\u7684\u53d1\u75c5\u7387\uff0c\u56e0\u6b64\u786e\u5b9a\u66f4\u591a\u7684\u60a3\u8005\u5bf9\u4e8e\u4e86\u89e3\u5176\u5168\u7403\u5f71\u54cd\u81f3\u5173\u91cd\u8981\u3002<\/p>\n

\u8054\u7cfb\u8d35\u7ec4\u7ec7\u7684\u6700\u4f73\u65b9\u5f0f\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n

\u7f51\u7ad9\u3001Facebook \u7fa4\u7ec4\u6216\u7535\u5b50\u90ae\u4ef6<\/p>\n

\u60a8\u8fd8\u6709\u4ec0\u4e48\u8981\u8865\u5145\u7684\u5417\uff1f<\/strong><\/p>\n

\u00a0\u533a\u5206 VCP \u75c5\u548c LGMD \u53d8\u5f02\u7684\u5173\u952e\u95ee\u9898\u662f\u9057\u4f20\u95ee\u9898\uff0c\"\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u662f\u5426\u8868\u73b0\u51fa\u808c\u65e0\u529b\u3001\u9aa8\u75c5\u548c\/\u6216\u75f4\u5446\uff1f VCP \u75c5\u662f\u5e38\u67d3\u8272\u4f53\u663e\u6027\u9057\u4f20\u75c5\uff0c\u591a\u6570\u60c5\u51b5\u4e0b\u662f\u5bb6\u65cf\u9057\u4f20\uff0c\u53ef\u80fd\u4f1a\u8868\u73b0\u51fa\u4e0d\u540c\u7684\u75c7\u72b6\u3002 \u6211\u7684\u6bcd\u4eb2\u3001\u59e8\u5988\u548c\u4e24\u4e2a\u8205\u8205\uff086 \u4e2a\u5144\u5f1f\u59d0\u59b9\u4e2d\u7684 4 \u4e2a\uff09\u60a3\u6709 VCP \u75c5\u3002 \u7531\u4e8e\u6211\u662f\u57fa\u56e0\u7a81\u53d8\u7684\u643a\u5e26\u8005\uff0c\u56e0\u6b64\u6211\u7684\u540e\u4ee3\u6709\u4e00\u534a\u53ef\u80fd\u53d7\u5230\u5f71\u54cd\u3002 \u73b0\u5728\uff0cVCP \u57fa\u56e0\u5df2\u88ab\u5217\u5165\u5927\u591a\u6570\u795e\u7ecf\u808c\u8089\u75be\u75c5\u57fa\u56e0\u68c0\u6d4b\u9879\u76ee\u4e2d\u3002<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Cure VCP Disease, Inc. - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/zh\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - LGMD Awareness Foundation\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/zh\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2019-12-27T20:48:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2021-02-19T18:34:05+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/07\/Cure-VCP.png\" \/>\n\t<meta property=\"og:image:width\" content=\"960\" \/>\n\t<meta property=\"og:image:height\" content=\"720\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"ORGANIZATION: Cure VCP Disease, Inc.\",\"datePublished\":\"2019-12-27T20:48:00+00:00\",\"dateModified\":\"2021-02-19T18:34:05+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\"},\"wordCount\":730,\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/07\/Cure-VCP.png\",\"articleSection\":[\"LGMD Organization - 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