{"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\/ko\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"\uc870\uc9c1: \uc9c0\uc5d0\ud504\ube44 \uc628\ud50c\ub7ec\uc2a4"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

\uc870\uc9c1 \uc774\ub984<\/strong>: GFB \uc628\ud50c\ub7ec\uc2a4(\uadf8\ub8f9 \ud30c\ubc00\ub9ac\uc544\ub9ac \ubca0\ud0c0-\uc0ac\ub974\ucf54\uae00\ub9ac\uce78\ub178\ud30c\ud2f0 \uc628\ud50c\ub7ec\uc2a4)<\/p>\n

\uc6f9 \uc0ac\uc774\ud2b8:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.lgmd2e.org<\/a><\/p>\n

\ud398\uc774\uc2a4\ubd81:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n

\ud2b8\uc704\ud130:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>twitter.com\/gfbonlus<\/a><\/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><\/p>\n

\uc0ac\uc9c0 \uac70\ub4e4 \uadfc\uc774\uc601\uc591\uc99d 2E\ud615(LGMD2E)\uc5d0 \uc9d1\uc911\ud569\ub2c8\ub2e4.<\/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

\uc800\ud76c \uc6f9\uc0ac\uc774\ud2b8\uc5d0\uc11c\ub294 \uac1c\uc778\uc815\ubcf4 \ubcf4\ud638\ubc95\uc5d0 \ub530\ub77c Lgmd2E-Lgmd2D-Lgmd2C-Lgmd2F\uc758 \uc601\ud5a5\uc744 \ubc1b\ub294 \uc0ac\ub78c\ub4e4\uc5d0 \uad00\ud55c \uc815\ubcf4\ub97c \uc218\uc9d1\ud569\ub2c8\ub2e4. \uccab \ubc88\uc9f8 \ubaa9\ud45c\ub294 \ud1b5\uacc4 \ub370\uc774\ud130\ub97c \uc815\uad50\ud654\ud558\ub294 \uac83\uc774\uba70, \ub450 \ubc88\uc9f8 \ubaa9\ud45c\ub294 \uadfc\uac10\uc18c\uc99d \ud658\uc790 \ub4f1\ub85d\uc744 \ub9cc\ub4dc\ub294 \uac83\uc785\ub2c8\ub2e4.<\/p>\n

\uc5ec\uae30\uc5d0\uc11c \ud658\uc790 \ud1b5\uacc4\ub97c \ud655\uc778\ud560 \uc218 \uc788\uc2b5\ub2c8\ub2e4:
http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&view=article&id=47&Itemid=53<\/p>\n

GFB\ub294 \ud604\uc7ac \ucd1d 403\uba85\uc758 \uc0ac\ucf54\uae00\ub9ac\uce78\ubcd1(LGMD2C -2D - 2E -2F) \ud658\uc790\ub97c \uc9d1\uacc4\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uacf5\uc720\ud560 \ucd94\uac00 \uc815\ubcf4\uac00 \uc788\ub294 \uc0ac\ub78c\uc740 \ub2e4\uc74c \uc8fc\uc18c\ub85c \uc815\ubcf4\ub97c \ubcf4\ub0b4\uc8fc\uc2dc\uae30 \ubc14\ub78d\ub2c8\ub2e4. info@beta-sarcoglicanopatie.it<\/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

\uc608, \uc800\ud76c\ub294 \ube44\uc601\ub9ac \ub2e8\uccb4\uc785\ub2c8\ub2e4. 2013\ub144 2\uc6d4 27\uc77c \uc774\ud0c8\ub9ac\uc544\uc5d0\uc11c GFB Onlus\ub294 \uacf5\uc2dd\uc801\uc73c\ub85c \uc790\uc6d0\ubd09\uc0ac \ub2e8\uccb4\ub85c \uc124\ub9bd\ub418\uc5c8\uc73c\uba70, \ub86c\ubc14\ub974\ub514\uc544\uc758 \uc9c0\uc5ed \uc790\uc6d0\ubd09\uc0ac \ub2e8\uccb4 \ub4f1\ub85d \ubc88\ud638 SO-81\uc758 \uc9c0\ubc29 \ub4f1\ub85d\ubd80\uc5d0 \ub4f1\ub85d\ub418\uc5c8\uc2b5\ub2c8\ub2e4. 2014 \ub144\uc5d0\ub294 \uac00\uc871 \uc5f0\ub300 \ud611\ud68c n. 947\uc758 \uc9c0\uc5ed \ub4f1\ub85d\ubd80\uc5d0\ub3c4 \ud3ec\ud568\ub418\uc5c8\uc2b5\ub2c8\ub2e4.<\/p>\n

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

\uc218\ub144 \ub3d9\uc548 \uc6b0\ub9ac\ub294 \uc544\uc774\ub4e4\uc758 \uc9c8\ubcd1\uc744 \uacbd\ud5d8\ud558\uba74\uc11c \uc774 \uc9c8\ubcd1\uc744 \ub300\uc0c1\uc73c\ub85c \ud55c \uc815\ud655\ud55c \uacfc\ud559\uc801 \uc5f0\uad6c\uc640 \uce58\ub8cc\ubc95\uc774 \uc5c6\ub2e4\ub294 \uac83\uc744 \uae68\ub2ec\uc558\uc2b5\ub2c8\ub2e4(2012\ub144\uae4c\uc9c0). \uc6b0\ub9ac\ub294 \uc644\uc804\ud788 \ud640\ub85c \ub0a8\uaca8\uc84c\uace0 \uac8c\ub2e4\uac00 Lgmd2E\uc5d0 \ub300\ud55c \uc5f0\uad00\uc131\ub3c4 \uc5c6\uc5c8\uc2b5\ub2c8\ub2e4.<\/p>\n

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

Gfb Onlus\ub294 \uc9c8\ubcd1 \uce58\ub8cc\ub97c \ubaa9\ud45c\ub85c \ud558\ub294 \uc5f0\uad6c \ud504\ub85c\uc81d\ud2b8\uc5d0 \uc790\uae08\uc744 \uc9c0\uc6d0\ud558\uae30 \uc704\ud574 \ub9cc\ub4e4\uc5b4\uc84c\uc2b5\ub2c8\ub2e4. \ub610\ud55c \uc774 \ud2b9\uc815 \uc9c8\ud658\uc5d0 \ub300\ud55c \uac00\uc7a5 \ucd5c\uc2e0\uc758 \ud2b9\uc815 \uc5f0\uad6c \ud65c\ub3d9\ubfd0\ub9cc \uc544\ub2c8\ub77c \uc27d\uac8c \ucc3e\uc744 \uc218 \uc5c6\ub294 \uc815\ubcf4\/\ub274\uc2a4\uc5d0 \ub300\ud574 \ub354 \ub098\uc740 \uc815\ubcf4\ub97c \uc81c\uacf5\ud558\uae30 \uc704\ud55c \ubc29\ubc95\uc774 \ub418\uace0\uc790 \ud569\ub2c8\ub2e4. \uc6b0\ub9ac\uc758 \uc784\ubb34\ub294 \uae30\uad00, \uc5f0\uad6c \ub2e8\uccb4, \uae30\ud0c0 \ud611\ud68c, \ud658\uc790\ub4e4\uc744 \ud5a5\ud574 Lgmd2E\ub97c \uac00\uc9c4 \uc0ac\ub78c\ub4e4\uc744 \ub300\ubcc0\ud558\ub294 \uac83\uc785\ub2c8\ub2e4. \uc774 \uc5ed\ud560\uc740 \uc774\ud0c8\ub9ac\uc544\ub098 \ud574\uc678\uc5d0\uc11c \uc6b0\ub9ac\uc640 \uac19\uc740 \ubaa9\uc801\uc744 \uac00\uc9c4 \ub2e4\ub978 \uadf8\ub8f9\uc774 \uc874\uc7ac\ud558\uc9c0 \uc54a\uae30 \ub54c\ubb38\uc5d0 \uc9c0\uae08\uae4c\uc9c0 \uc6b0\ub9ac\ub9cc\uc774 \uc720\uc9c0\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uc774 \uc6f9 \uc0ac\uc774\ud2b8\uc640 \uc790\uc870 \uadf8\ub8f9\uc740\uc774 \uc9c8\ubcd1\uc758 \uc601\ud5a5\uc744\ubc1b\ub294 \ub2e4\ub978 \uac00\uc871\ub4e4\uacfc \uc5f0\ub77d\ud558\uc5ec\uc774 \uc9c8\ubcd1\uc73c\ub85c \ub9e4\uc77c \uc0dd\ud65c\ud558\ub294 \ub2e4\uc591\ud55c \uce21\uba74\uacfc \uacfc\ud559 \uc5f0\uad6c \ubc0f \ub2e4\uc591\ud55c \ubcf4\uc870\uae30\uad6c \uc0ac\uc6a9\uacfc \uad00\ub828\ub41c \uc784\uc0c1, \ubc95\ub960, \ubb3c\ub958, \uc870\uc9c1\uc801 \uce21\uba74\uc744 \uacf5\uc720\ud558\ub824\ub294 \uc5f4\ub9dd\uc5d0\uc11c \ub9cc\ub4e4\uc5b4\uc84c\uc2b5\ub2c8\ub2e4. \uc6b0\ub9ac\uc758 \uc758\ub3c4\ub294 \ud5a5\ud6c4 \ud658\uc790 \ub4f1\ub85d \ubc0f \ud2b9\uc815 \uc784\uc0c1 \uc2dc\ud5d8\uc744 \uace0\ub824\ud558\uc5ec \uc774\ub7ec\ud55c \ud658\uc790\ub4e4\uc5d0 \ub300\ud55c \uccab \ubc88\uc9f8 \ub370\uc774\ud130 \uc218\uc9d1\uc744 \uc2e4\ud604\ud558\ub294 \uac83\uc785\ub2c8\ub2e4.<\/p>\n

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

2012: 2012\ub144 8\uc6d4\ubd80\ud130 GFB\uc758 \uac00\uc871\ub4e4\uc740 \uc624\ud558\uc774\uc624 \uc8fc \ucf5c\ub7fc\ubc84\uc2a4\uc5d0\uc11c LGMD2E \uc720\uc804\uc790 \uce58\ub8cc \ud504\ub85c\uc81d\ud2b8\uc5d0 \uccab \ubc88\uc9f8 \uae30\uae08\uc744 \uc9c0\uc6d0\ud558\uae30\ub85c \uacb0\uc815\ud588\uc2b5\ub2c8\ub2e4. J. \uba58\ub378. \ud604\uc7ac\uae4c\uc9c0 \ucd1d $ 1,300,000\ub2ec\ub7ec\uc5d0 \ub300\ud55c \ub2e4\uc12f \ucc28\ub840\uc758 \uae30\uae08\uc774 \uc9c0\uae09\ub418\uc5c8\uc2b5\ub2c8\ub2e4. 2017: \ubbf8\uc624\ub125\uc11c\uc2a4 \ud14c\ub77c\ud4e8\ud2f1\uc2a4 \ucef4\ud37c\ub2c8\uac00 \ud0c4\uc0dd\ud558\uace0 GFB \uc628\ub7ec\uc2a4\uac00 \ud68c\uc0ac\uc5d0 \ud569\ub958\ud569\ub2c8\ub2e4. Myonexus Therapeutics Company\uc758 \ubaa9\ud45c\ub294 \uc0ac\uc9c0 \uac70\ub4e4 \uadfc\uc774\uc601\uc591\uc99d(LGMD) 2B, 2C, 2D, 2E \ubc0f 2L\ud615 \uc720\uc804\uc790 \uce58\ub8cc\uc81c\ub97c \uac1c\ubc1c\ud558\ub294 \uac83\uc785\ub2c8\ub2e4. http:\/\/myonexustx.com\/ 2018: \ubbf8\uad6d\uc5d0 \ubcf8\uc0ac\ub97c \ub454 \uc0dd\uba85\uacf5\ud559 \uae30\uc5c5 \uc0ac\ub819\ud0c0\uc640 \ub9c8\uc774\uc624\ub125\uc11c\uc2a4 \uac04\uc758 \uacc4\uc57d \uccb4\uacb0\uc5d0 GFB \uc628\ud50c\ub7ec\uc2a4\uac00 \ucc38\uc5ec\ud588\uc2b5\ub2c8\ub2e4. \uadf8 \ubc16\uc758 \ud65c\ub3d9\uc73c\ub85c\ub294 \ud2b8\ub808\ud0b9 \uccb4\uc5b4 \ubc0f \uae30\ud0c0 \uc2a4\ud3ec\uce20(\ud558\ub298) \ubc0f \uc7a5\uc560\uc778\uc744 \uc704\ud55c \ub808\ud06c\ub9ac\uc5d0\uc774\uc158 \ud65c\ub3d9\uc744 \uc704\ud55c \uc0b0\uc545 \uc5ec\ud589 \uc870\uc9c1, GFB \uc628\ud50c\ub7ec\uc2a4 \uac00\uc871 \uc5f0\ub840 \ud68c\uc758 \uc870\uc9c1, \uc7a5\uc560\uc778\uc744 \uc704\ud55c \uad50\ud1b5 \uc11c\ube44\uc2a4, \uacf5\uacf5 \uae30\uad00\uacfc\uc758 \ud611\uc57d\uc744 \ud1b5\ud55c \uc7a5\uc560\uc778\uc744 \uc704\ud55c \uad6d\uc81c \uacfc\ud559 \ud68c\uc758 \uc870\uc9c1, LGMD2E \ubc0f \uae30\ud0c0 \ub2f9\ud654\ubcd1\uc99d \ubc0f \uc7a5\uc560\uc778\uc744 \uc704\ud55c \uc2ec\ub9ac\uc801 \uc9c0\uc6d0 \ub4f1\uc774 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

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

\ubbf8\uad6d \uc624\ud558\uc774\uc624\uc8fc \ucf5c\ub7fc\ubc84\uc2a4\uc758 J. \uba58\ub378 \uad50\uc218\uac00 \uc8fc\uad00\ud558\ub294 Lgmd2e \uc720\uc804\uc790 \uce58\ub8cc \ud504\ub85c\uc81d\ud2b8\uc758 \uc804\uc784\uc0c1 \ub2e8\uacc4\uc5d0 \ub300\ud55c \uc790\uae08 \uc9c0\uc6d0($ 1,300,000), Myonexus Therapeutics\uc5d0 \ub300\ud55c \ucc38\uc5ec \ubc0f \uc0ac\ub819\ud0c0\uc640 Myonexus \uac04\uc758 \uacc4\uc57d \uccb4\uacb0\uc744 \uc704\ud574.<\/p>\n

\uadc0\uc0ac\uc5d0 \ub300\ud574 \uc804 \uc138\uacc4\uac00 \uc54c\uc558\uc73c\uba74 \ud558\ub294 \uac83\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n

\uc800\ud76c\ub294 \uc774 \ubd84\uc57c\uc5d0\uc11c \ud6cc\ub96d\ud55c \uad00\uacc4\ub97c \uad6c\ucd95\ud558\uace0 \uc788\uc73c\uba70, \uc784\uc0c1\uc2dc\ud5d8\uc744 \uc9c4\ud589\ud560 \uc900\ube44\uac00 \ub418\uc5c8\uc744 \ub54c \ub3c4\uc6c0\uc774 \ub420 \ub808\uc9c0\uc2a4\ud2b8\ub9ac\ub97c \uad6c\ucd95\ud560 \uc218 \uc788\uae30\ub97c \ubc14\ub78d\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

\ub2f9\uc0ac \uc6f9\uc0ac\uc774\ud2b8\uc5d0\ub294 \ub2f9\uc0ac\uc5d0 \uc5f0\ub77d\ud558\uace0 \uc138\uae08 \uacf5\uc81c \uae30\ubd80\ub97c \ud560 \uc218 \uc788\ub294 \uc815\ubcf4\uac00 \uc788\uc2b5\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

\ub2e4\uc74c \uc8fc\uc18c\ub85c \uc774\uba54\uc77c\uc744 \ubcf4\ub0b4\uc8fc\uc138\uc694. info@beta-sarcoglicanopatie.it<\/a> . \uc5b8\uc81c\ub4e0\uc9c0 \ubb38\uc758\ud574 \uc8fc\uc138\uc694. Facebook\uc774\ub098 Twitter\ub97c \ud1b5\ud574\uc11c\ub3c4 \uc5b8\uc81c\ub4e0\uc9c0 \uba54\uc2dc\uc9c0\ub97c \ubcf4\ub0b4\uc2e4 \uc218 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

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

\uc6b0\ub9ac\ub294 LGMD2E \ubc0f \uae30\ud0c0 LGMD \ud558\uc704 \uc720\ud615\uc5d0 \ub300\ud55c \uce58\ub8cc \ubc0f \uce58\ub8cc\ubc95 \uac1c\ubc1c\uc5d0 \uc131\uacf5\ud558\uae30\ub97c \uace0\ub300\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS) […]<\/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":"\nORGANIZATION: GFB ONLUS - 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=\"http:\/\/www.lgmd-info.org\/ko\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: GFB ONLUS - 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