{"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\/ko\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"\uc870\uc9c1: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

\uc870\uc9c1 \uc774\ub984<\/strong>: Cure VCP Disease, Inc.<\/p>\n

\uc6f9 \uc0ac\uc774\ud2b8:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

\ud398\uc774\uc2a4\ubd81:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

\ud2b8\uc704\ud130:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> \ub85c\uc2a4\ud2b8 \ud14d\uc0b0 \uc778\uac00<\/p>\n

\uc870\uc9c1\uc774 \uc911\uc810\uc744 \ub450\uace0 \uc788\ub294 LGMD \ud558\uc704 \uc720\ud615\uc740 \ubb34\uc5c7\uc778\uac00\uc694?\u00a0 <\/strong>\u00a0<\/p>\n

VCP \uc9c8\ud658, \ud2b9\ud788 \uace8\uc758 \ud30c\uc81c\ud2b8\ubcd1 \ubc0f \uc804\ub450\uce21\ub450\uc5fd \uce58\ub9e4(IBMPFD)\uc640 \uad00\ub828\ub41c \ub0b4\ud3ec\uccb4 \uadfc\ubcd1\uc99d.\u00a0<\/p>\n

\ud558\uc704 \uc720\ud615\uc5d0 \ucd08\uc810\uc744 \ub9de\ucd94\ub294 \uacbd\uc6b0 \ub808\uc9c0\uc2a4\ud2b8\ub9ac\uac00 \uc788\uc73c\uba70 \ud658\uc790\ub294 \uc5b4\ub5bb\uac8c \uac00\uc785\ud560 \uc218 \uc788\ub098\uc694?<\/strong><\/p>\n

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

\uadc0\uc0ac\ub294 \ube44\uc601\ub9ac \ub2e8\uccb4\uc778\uac00\uc694? \uadf8\ub807\ub2e4\uba74 \uc5b4\ub5a4 \uc720\ud615\uc778\uac00\uc694?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 \uc608, \ub2f9\uc0ac\ub294 501(c)(3) \uacf5\uacf5 \ube44\uc601\ub9ac \ub2e8\uccb4\uc785\ub2c8\ub2e4.<\/p>\n

\uc870\uc9c1\uc744 \ub9cc\ub4e4\uac8c \ub41c \uacc4\uae30<\/strong>:<\/p>\n

\u00a0\ud658\uc790\uc640 \uc5f0\uad6c\uc790\ub4e4\uc5d0\uac8c VCP \uc9c8\ud658\uc5d0 \ub300\ud55c \uc778\uc2dd\uc744 \uc815\ub9ac\ud558\uace0 \uc81c\uacf5\ud558\ub294 \uacf5\uc2dd\uc801\uc778 \uc870\uc9c1\uc774 \uc874\uc7ac\ud558\uc9c0 \uc54a\uc558\uc2b5\ub2c8\ub2e4. \uc800\ub3c4 \ud658\uc790\uc778\ub370\ub2e4 \uc5b4\uba38\ub2c8\ub97c \uc774 \uc9c8\ud658\uc73c\ub85c \uc783\uc740 \uacbd\ud5d8\uc774 \uc788\uc5b4\uc11c \uc5f0\uad6c \ucee4\ubba4\ub2c8\ud2f0\uc5d0\uc11c \ubb34\uc5b8\uac00 \uc77c\uc5b4\ub098\uae30\ub97c \uae30\ub2e4\ub9ac\uba70 \uac00\ub9cc\ud788 \uc788\uc744 \uc218 \uc5c6\ub2e4\uace0 \uc0dd\uac01\ud588\uc2b5\ub2c8\ub2e4. \ud658\uc790 \uc9d1\ub2e8\uc73c\ub85c\uc11c \uae0d\uc815\uc801\uc778 \uacb0\uacfc\ub97c \uc774\ub04c\uc5b4\ub0b4\uae30 \uc704\ud574\uc11c\ub294 \uc801\uadf9\uc801\uc778 \ucc38\uc5ec\uac00 \ud544\uc694\ud588\uc9c0\ub9cc, \ubb34\uc5c7\ubcf4\ub2e4\ub3c4 \ud658\uc790 \uc9d1\ub2e8\uc744 \ud30c\uc545\ud558\ub294 \uac83\uc774 \uac00\uc7a5 \uc911\uc694\ud588\uc2b5\ub2c8\ub2e4.\u00a0<\/p>\n

\uc870\uc9c1\uc758 \ubbf8\uc158\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong><\/p>\n

\ub294 \ubc1c\ub85c\uc2e0 \ud568\uc720 \ub2e8\ubc31\uc9c8 \uc720\uc804\uc790\uc758 \ub3cc\uc5f0\ubcc0\uc774\uc640 \uad00\ub828\ub41c \uc9c8\ubcd1\uc744 \uce58\ub8cc\ud558\uae30 \uc704\ud55c \ub178\ub825\uc744 \ucd94\uc9c4\ud558\uae30 \uc704\ud574 \uc124\ub9bd\ub418\uc5c8\uc2b5\ub2c8\ub2e4. \uc5ec\uae30\uc5d0\ub294 \ud30c\uc81c\ud2b8 \uace8\ubcd1 \ubc0f \uc804\uce21\ub450\uce21\ub450\uc5fd \uce58\ub9e4(IBMPFD)\uc640 \uad00\ub828\ub41c \ubd09\uc785\uccb4 \uadfc\ubcd1\uc99d \uc9c8\ud658\uc774 \ud3ec\ud568\ub429\ub2c8\ub2e4. \uc6b0\ub9ac\ub294 \uc758\uc0ac, \uc5f0\uad6c\uc790, \ud22c\uc790\uc790, \ud658\uc790, \uac04\ubcd1\uc778 \ubc0f \uc77c\ubc18 \ub300\uc911\uc5d0\uac8c VCP \uc9c8\ud658\uc5d0 \ub300\ud55c \uae00\ub85c\ubc8c \uad50\uc721\uacfc \uc778\uc2dd\uc744 \uc81c\uacf5\ud558\ub294 \uac83\uc744 \ubaa9\ud45c\ub85c \ud569\ub2c8\ub2e4.<\/p>\n

\uc870\uc9c1\uc774 \uc81c\uacf5\ud558\ub294 \uc11c\ube44\uc2a4<\/strong><\/p>\n

\u00a0\uc800\ud76c\ub294 \uc804 \uc138\uacc4 VCP \uc9c8\ud658 \ud658\uc790\ub4e4\uc758 \ud658\uc790 \ub4f1\ub85d\ubd80\ub97c \uad00\ub9ac\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4. \ucee8\ud37c\ub7f0\uc2a4, \uc774\uba54\uc77c \ub274\uc2a4\ub808\ud130, \uc628\ub77c\uc778 \ub9ac\uc18c\uc2a4, \uc6e8\ube44\ub098\ub97c \ud1b5\ud574 \ud658\uc790\ub4e4\uc5d0\uac8c \ud76c\ub9dd\uacfc \uad50\uc721\uc744 \uc81c\uacf5\ud569\ub2c8\ub2e4.<\/p>\n

\uadc0\uc0ac\uc758 \uac00\uc7a5 \uc790\ub791\uc2a4\ub7ec\uc6b4 \uc810\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong><\/p>\n

\u00a02018\ub144 1\uc6d4\uc5d0 \uc2dc\uc791\ud558\uc5ec 2019\ub144 4\uc6d4\uc5d0 \uccab \ubc88\uc9f8 VCP \uc9c8\ud658 \ud658\uc790 \ubc0f \ubcf4\ud638\uc790 \ucee8\ud37c\ub7f0\uc2a4\ub97c \uac1c\ucd5c\ud588\uc2b5\ub2c8\ub2e4. \uc57d 60\uba85\uc758 \ud658\uc790, \uac04\ubcd1\uc778, \uc5f0\uad6c\uc790\uac00 \ucc38\uc11d\ud588\uc2b5\ub2c8\ub2e4. \ub179\ud654\ub41c \ubaa8\ub4e0 \uc138\uc158\uc740 VCP \uc9c8\ud658 \uce58\ub8cc \uc720\ud29c\ube0c \ucc44\ub110\uc5d0\uc11c \ud655\uc778\ud560 \uc218 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

\uc870\uc9c1\uc5d0 \ub300\ud574 \uc138\uc0c1\uc5d0 \uc54c\ub9ac\uace0 \uc2f6\uc740 \ub0b4\uc6a9<\/strong>:<\/p>\n

\u00a0\ub9ce\uc740 \ud658\uc790\ub4e4\uc774 LGMD \ub610\ub294 \ubd09\uc785\uccb4 \uadfc\uc5fc\uc73c\ub85c \uc624\uc9c4\uc744 \ubc1b\uc2b5\ub2c8\ub2e4. \uc815\ud655\ud55c \uc9c4\ub2e8\uc744 \ubc1b\uae30 \uc704\ud55c \uc5ec\uc815\uc740 \ub9ce\uc740 \uc2e0\uacbd\uadfc\uc721 \uc9c8\ud658 \ud658\uc790\uc5d0\uac8c \uc2a4\ud2b8\ub808\uc2a4\uac00 \ub420 \uc218 \uc788\uc2b5\ub2c8\ub2e4. \uc800\ud76c\uc758 \ubaa9\ud45c\ub294 \ubaa8\ub4e0 \uc131\uc778 \ubc1c\ubcd1 \uc2e0\uacbd\uadfc\uc721 \uc9c8\ud658 \uad00\ub828 \ub2e8\uccb4\uc640 \ud611\ub825\ud558\uc5ec \uc778\uc2dd \uc81c\uace0, \uad50\uc721 \ubc0f \ubaa8\ubc94 \uc0ac\ub840\ub97c \ucd09\uc9c4\ud558\ub294 \uac83\uc785\ub2c8\ub2e4. \uc6b0\ub9ac \ubaa8\ub450\ub294 \uc9c8\ubcd1\uc73c\ub85c \uc778\ud574 \ub9ce\uc740 \ub3d9\uc77c\ud55c \ub3c4\uc804\uc5d0 \uc9c1\uba74\ud558\uace0 \uc788\uc73c\uba70, \uc9c8\ubcd1\uc758 \uacfc\ud559\uc740 \ub2e4\ub97c \uc218 \uc788\uc9c0\ub9cc \uc6b0\ub9ac\ub294 \ubaa8\ub450 \ud568\uaed8 \uc774 \ubb38\uc81c\ub97c \ud574\uacb0\ud574\uc57c \ud569\ub2c8\ub2e4.<\/p>\n

\uc0ac\ub78c\ub4e4\uc774 \uc870\uc9c1\uc744 \uc9c0\uc6d0\ud558\ub294 \ub370 \uc5b4\ub5bb\uac8c \ucc38\uc5ec\ud560 \uc218 \uc788\uc744\uae4c\uc694?<\/strong><\/p>\n

\u00a0\uc800\ud76c\ub294 \ud658\uc790, \uac04\ubcd1\uc778, \uacfc\ud559\uacc4\uc640 \uc18c\ud1b5\ud560 \uc218 \uc788\ub294 \uc570\ubc30\uc11c\ub354 \ud504\ub85c\uadf8\ub7a8\uc744 \ub9cc\ub4e4\ub824\uace0 \ud569\ub2c8\ub2e4. \uc6b0\ub9ac\ub294 VCP \uc9c8\ud658\uc758 \uc720\ubcd1\ub960\uc744 \uc54c\uc9c0 \ubabb\ud558\uba70, \ub354 \ub9ce\uc740 \ud658\uc790\ub97c \ud30c\uc545\ud558\ub294 \uac83\uc774 \uc804 \uc138\uacc4\uc5d0 \ubbf8\uce58\ub294 \uc601\ud5a5\uc744 \uc774\ud574\ud558\ub294 \ub370 \ub9e4\uc6b0 \uc911\uc694\ud569\ub2c8\ub2e4.<\/p>\n

\uc870\uc9c1\uc5d0 \uc5f0\ub77d\ud558\ub294 \uac00\uc7a5 \uc88b\uc740 \ubc29\ubc95\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong><\/p>\n

\uc6f9\uc0ac\uc774\ud2b8, Facebook \uadf8\ub8f9 \ub610\ub294 \uc774\uba54\uc77c<\/p>\n

\ucd94\uac00\ud558\uace0 \uc2f6\uc740 \ub0b4\uc6a9\uc774 \uc788\ub098\uc694?<\/strong><\/p>\n

\u00a0VCP \uc9c8\ud658\uacfc LGMD \ub3cc\uc5f0\ubcc0\uc774\ub97c \uad6c\ubcc4\ud558\uae30 \uc704\ud55c \ud575\uc2ec \uc9c8\ubb38\uc740 \"\ub2e4\ub978 \uac00\uc871 \uad6c\uc131\uc6d0\uc774 \uadfc\ub825 \uc57d\ud654, \ubf08 \uc9c8\ud658 \ubc0f\/\ub610\ub294 \uce58\ub9e4 \uc99d\uc0c1\uc744 \ubcf4\uc774\ub294\uac00?\"\ub77c\ub294 \uc720\uc804\uc801 \uc9c8\ubb38\uc785\ub2c8\ub2e4. VCP \uc9c8\ud658\uc740 \uc0c1\uc5fc\uc0c9\uccb4 \uc6b0\uc131 \uc9c8\ud658\uc73c\ub85c \ub300\ubd80\ubd84 \uac00\uc871\uc744 \ud1b5\ud574 \uc804\uc5fc\ub418\uba70 \ub2e4\ub978 \uc99d\uc0c1\uc73c\ub85c \ub098\ud0c0\ub0a0 \uc218 \uc788\uc2b5\ub2c8\ub2e4. \uc81c \uc5b4\uba38\ub2c8, \uc774\ubaa8, \uc0bc\ucd0c 2\uba85(6\ub0a8\ub9e4 \uc911 4\uba85)\uc774 VCP \uc9c8\ud658\uc744 \uc553\uc558\uac70\ub098 \uc553\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uc81c\uac00 \ub3cc\uc5f0\ubcc0\uc774 \ubcf4\uade0\uc790\uc774\ubbc0\ub85c \uc81c \uc790\uc190\uc774 \uc601\ud5a5\uc744 \ubc1b\uc744 \ud655\ub960\uc740 50\/50\uc785\ub2c8\ub2e4. VCP \uc720\uc804\uc790\ub294 \ud604\uc7ac \ub300\ubd80\ubd84\uc758 \uc2e0\uacbd\uadfc\uc721 \uc9c8\ud658 \uc720\uc804\uc790 \uac80\uc0ac \ud328\ub110\uc5d0 \ud3ec\ud568\ub418\uc5b4 \uc788\uc2b5\ub2c8\ub2e4.<\/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\/ko\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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