{"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\/ja\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"\u56e3\u4f53\u540d\uff1aGFB\u30aa\u30f3\u30e9\u30b9"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

\u56e3\u4f53\u540d<\/strong>: GFB ONLUS\uff08\u30b0\u30eb\u30c3\u30dd\u30fb\u30d5\u30a1\u30df\u30ea\u30fc\u30fb\u30d9\u30fc\u30bf\u30fb\u30b5\u30eb\u30b3\u30b0\u30ea\u30ab\u30ce\u30d1\u30c6\u30a3\u30fb\u30aa\u30f3\u30fb\u30e9\u30b9\uff09<\/p>\n

\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.lgmd2e.org<\/a><\/p>\n

FACEBOOK\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n

\u30c4\u30a4\u30c3\u30bf\u30fc\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>twitter.com\/gfbonlus<\/a><\/p>\n

\u3042\u306a\u305f\u306e\u7d44\u7e54\u306f\u3069\u306e\u3088\u3046\u306aLGMD\u30b5\u30d6\u30bf\u30a4\u30d7\u306b\u91cd\u70b9\u3092\u7f6e\u3044\u3066\u3044\u307e\u3059\u304b\uff1a\u00a0 <\/strong><\/p>\n

\u80a2\u5e2f\u578b\u7b4b\u30b8\u30b9\u30c8\u30ed\u30d5\u30a3\u30fc2E\u578b\uff08LGMD2E\uff09\u306b\u7126\u70b9\u3092\u5f53\u3066\u3066\u3044\u307e\u3059\u3002<\/p>\n

\u3042\u308b\u30b5\u30d6\u30bf\u30a4\u30d7\u306b\u7126\u70b9\u3092\u5f53\u3066\u305f\u5834\u5408\u3001\u30ec\u30b8\u30b9\u30c8\u30ea\u306f\u5b58\u5728\u3057\u3001\u60a3\u8005\u306f\u3069\u306e\u3088\u3046\u306b\u53c2\u52a0\u3067\u304d\u308b\u306e\u304b\uff1f <\/strong><\/p>\n

\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3067\u306f\u3001\u500b\u4eba\u60c5\u5831\u4fdd\u8b77\u6cd5\u306b\u5f93\u3044\u3001Lgmd2E- Lgmd2D- Lgmd2C - Lgmd2F\u306b\u7f79\u60a3\u3055\u308c\u305f\u65b9\u306b\u95a2\u3059\u308b\u60c5\u5831\u3092\u53ce\u96c6\u3057\u3066\u3044\u307e\u3059\u3002\u7b2c\u4e00\u306e\u76ee\u7684\u306f\u7d71\u8a08\u30c7\u30fc\u30bf\u3092\u4f5c\u6210\u3059\u308b\u3053\u3068\u3067\u3042\u308a\u3001\u7b2c\u4e8c\u306e\u76ee\u7684\u306f\u30b5\u30eb\u30b3\u30b0\u30ea\u30ab\u30ce\u30d1\u30c6\u30a3\u30fc\u306e\u60a3\u8005\u767b\u9332\u3092\u4f5c\u6210\u3059\u308b\u3053\u3068\u3067\u3059\u3002<\/p>\n

\u5f53\u9662\u306e\u60a3\u8005\u7d71\u8a08\u306f\u3053\u3061\u3089\u304b\u3089\u3054\u89a7\u3044\u305f\u3060\u3051\u307e\u3059\uff1a
http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&view=article&id=47&Itemid=53<\/p>\n

\u73fe\u5728GFB\u3067\u306f\u3001Sarcoglycanopathy (LGMD2C -2D - 2E -2F)\u306b\u7f79\u60a3\u3057\u3066\u3044\u308b\u60a3\u8005\u3055\u3093\u3092403\u4eba\u96c6\u8a08\u3057\u3066\u3044\u307e\u3059\u3002\u8ffd\u52a0\u60c5\u5831\u3092\u304a\u6301\u3061\u306e\u65b9\u306f\u3001\u4e0b\u8a18\u307e\u3067\u3054\u9023\u7d61\u304f\u3060\u3055\u3044\u3002 info@beta-sarcoglicanopatie.it<\/a> .<\/p>\n

\u8cb4\u56e3\u4f53\u306f\u975e\u55b6\u5229\u56e3\u4f53\u3067\u3059\u304b\uff1f\u3082\u3057\u305d\u3046\u3067\u3042\u308c\u3070\u3001\u305d\u306e\u7a2e\u985e\u3092\u6559\u3048\u3066\u304f\u3060\u3055\u3044\uff1a\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

\u79c1\u305f\u3061\u306f\u975e\u55b6\u5229\u56e3\u4f53\u3067\u3059\u30022013\u5e742\u670827\u65e5\u3001GFB Onlus\u306f\u30a4\u30bf\u30ea\u30a2\u3067\u6b63\u5f0f\u306b\u4efb\u610f\u56e3\u4f53\u3068\u3057\u3066\u8a2d\u7acb\u3055\u308c\u3001\u30ed\u30f3\u30d0\u30eb\u30c7\u30a3\u30a2\u5dde\u306e\u4efb\u610f\u56e3\u4f53\u5730\u57df\u767b\u9332SO-81\u306b\u767b\u9332\u3055\u308c\u307e\u3057\u305f\u30022014\u5e74\u306b\u306f\u3001\u5bb6\u65cf\u9023\u5e2f\u5354\u4f1a\u306e\u5730\u57df\u767b\u9332947\u53f7\u306b\u3082\u767b\u9332\u3055\u308c\u307e\u3057\u305f\u3002<\/p>\n

\u7d44\u7e54\u5275\u8a2d\u306e\u304d\u3063\u304b\u3051<\/strong>:<\/p>\n

2012\u5e74\u307e\u3067\uff09\u3053\u306e\u75c5\u6c17\u3092\u5bfe\u8c61\u3068\u3057\u305f\u6b63\u78ba\u306a\u79d1\u5b66\u7684\u7814\u7a76\u3084\u6cbb\u7642\u30a2\u30d7\u30ed\u30fc\u30c1\u304c\u306a\u3044\u3053\u3068\u306b\u6c17\u3065\u304d\u306a\u304c\u3089\u3001\u79c1\u305f\u3061\u306f\u5b50\u4f9b\u305f\u3061\u306e\u75c5\u6c17\u3092\u7d4c\u9a13\u3057\u3066\u304d\u307e\u3057\u305f\u3002\u79c1\u305f\u3061\u306f\u5b8c\u5168\u306b\u53d6\u308a\u6b8b\u3055\u308c\u3001\u305d\u306e\u4e0a\u3001Lgmd2E\u306b\u95a2\u3059\u308b\u5b66\u4f1a\u3082\u3042\u308a\u307e\u305b\u3093\u3067\u3057\u305f\u3002<\/p>\n

\u3042\u306a\u305f\u306e\u7d44\u7e54\u306e\u4f7f\u547d\u306f\u4f55\u3067\u3059\u304b\uff1f<\/strong><\/p>\n

Gfb Onlus\u306f\u3001\u3053\u306e\u75c5\u6c17\u306e\u6cbb\u7642\u3092\u76ee\u7684\u3068\u3057\u305f\u7814\u7a76\u30d7\u30ed\u30b8\u30a7\u30af\u30c8\u306b\u8cc7\u91d1\u3092\u63d0\u4f9b\u3059\u308b\u305f\u3081\u306b\u8a2d\u7acb\u3055\u308c\u307e\u3057\u305f\u3002\u307e\u305f\u3001Lgmd2E\u3068\u3044\u3046\u75c5\u6c17\u306b\u95a2\u3059\u308b\u6700\u65b0\u306e\u7814\u7a76\u6d3b\u52d5\u3060\u3051\u3067\u306a\u304f\u3001\u306a\u304b\u306a\u304b\u77e5\u308b\u3053\u3068\u306e\u3067\u304d\u306a\u3044\u60c5\u5831\u3084\u30cb\u30e5\u30fc\u30b9\u3092\u3001\u79c1\u305f\u3061\u3084\u7686\u3055\u3093\u306b\u304a\u77e5\u3089\u305b\u3059\u308b\u624b\u6bb5\u306b\u3082\u306a\u308a\u305f\u3044\u3068\u8003\u3048\u3066\u3044\u307e\u3059\u3002\u79c1\u305f\u3061\u306e\u4f7f\u547d\u306f\u3001Lgmd2E\u3092\u6301\u3064\u4eba\u3005\u306e\u4ee3\u8868\u3068\u3057\u3066\u3001\u7814\u7a76\u6a5f\u95a2\u3001\u7814\u7a76\u56e3\u4f53\u3001\u305d\u306e\u4ed6\u306e\u56e3\u4f53\u3001\u305d\u3057\u3066\u60a3\u8005\u3092\u4ee3\u8868\u3059\u308b\u3053\u3068\u3067\u3059\u3002\u3053\u306e\u3088\u3046\u306a\u5f79\u5272\u3092\u62c5\u3063\u3066\u3044\u308b\u306e\u306f\u3001\u30a4\u30bf\u30ea\u30a2\u56fd\u5185\u306b\u3082\u6d77\u5916\u306b\u3082\u3001\u540c\u3058\u76ee\u7684\u3092\u6301\u3063\u305f\u30b0\u30eb\u30fc\u30d7\u304c\u5b58\u5728\u3057\u306a\u3044\u305f\u3081\u3001\u73fe\u5728\u306b\u81f3\u308b\u307e\u3067\u79c1\u305f\u3061\u3060\u3051\u3067\u3059\u3002\u3053\u306e\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3068\u76f8\u4e92\u6276\u52a9\u30b0\u30eb\u30fc\u30d7\u306f\u3001\u3053\u306e\u75c5\u6c17\u306b\u7f79\u60a3\u3057\u3066\u3044\u308b\u4ed6\u306e\u5bb6\u65cf\u3068\u9023\u7d61\u3092\u53d6\u308a\u5408\u3044\u3001\u3053\u306e\u75c5\u6c17\u3068\u5171\u306b\u6bce\u65e5\u3092\u751f\u304d\u308b\u3053\u3068\u306e\u69d8\u3005\u306a\u5074\u9762\u3084\u3001\u79d1\u5b66\u7684\u7814\u7a76\u3084\u69d8\u3005\u306a\u88dc\u52a9\u5668\u5177\u306e\u4f7f\u7528\u306b\u95a2\u3059\u308b\u81e8\u5e8a\u7684\u3001\u6cd5\u7684\u3001\u7269\u6d41\u7684\u3001\u7d44\u7e54\u7684\u306a\u5074\u9762\u3092\u5171\u6709\u3057\u305f\u3044\u3068\u3044\u3046\u9858\u3044\u304b\u3089\u4f5c\u3089\u308c\u307e\u3057\u305f\u3002\u79c1\u305f\u3061\u306e\u610f\u56f3\u306f\u3001\u5c06\u6765\u306e\u60a3\u8005\u767b\u9332\u3068\u7279\u5b9a\u306e\u81e8\u5e8a\u8a66\u9a13\u3092\u8996\u91ce\u306b\u5165\u308c\u3001\u3053\u308c\u3089\u306e\u60a3\u8005\u306b\u95a2\u3059\u308b\u6700\u521d\u306e\u30c7\u30fc\u30bf\u53ce\u96c6\u3092\u5b9f\u73fe\u3059\u308b\u3053\u3068\u3067\u3059\u3002<\/p>\n

\u3042\u306a\u305f\u306e\u7d44\u7e54\u306f\u3069\u306e\u3088\u3046\u306a\u30b5\u30fc\u30d3\u30b9\u3092\u63d0\u4f9b\u3057\u3066\u3044\u307e\u3059\u304b\uff1a<\/strong><\/p>\n

2012:2012\u5e748\u6708\u3088\u308a\u3001GFB\u306e\u5bb6\u65cf\u306f\u30aa\u30cf\u30a4\u30aa\u5dde\u30b3\u30ed\u30f3\u30d0\u30b9\u3067\u884c\u308f\u308c\u308bLGMD2E\u907a\u4f1d\u5b50\u6cbb\u7642\u30d7\u30ed\u30b8\u30a7\u30af\u30c8\u306b\u3001J.J. Mendell.\u73fe\u5728\u307e\u3067\u306b5\u56de\u3001\u5408\u8a08$ 1,300,000\u30c9\u30eb\u304c\u652f\u6255\u308f\u308c\u3066\u3044\u308b\u30022017:Myonexus Therapeutics Company\u304c\u8a95\u751f\u3057\u3001GFB ONLUS\u304c\u53c2\u5165\u3002\u30de\u30a4\u30aa\u30cd\u30af\u30b5\u30b9\u30fb\u30bb\u30e9\u30d4\u30e5\u30fc\u30c6\u30a3\u30af\u30b9\u793e\u306e\u76ee\u7684\u306f\u3001\u80a2\u5e2f\u578b\u7b4b\u30b8\u30b9\u30c8\u30ed\u30d5\u30a3\u30fc\uff08LGMD\uff092B\u578b\u30012C\u578b\u30012D\u578b\u30012E\u578b\u30012L\u578b\u306e\u907a\u4f1d\u5b50\u6cbb\u7642\u306e\u958b\u767a\u3067\u3042\u308b\u3002http:\/\/myonexustx.com\/ 2018\uff1aGFB Onlus\u306f\u3001\u7c73\u56fd\u306b\u672c\u793e\u3092\u7f6e\u304f2\u3064\u306e\u30d0\u30a4\u30aa\u30c6\u30af\u30ce\u30ed\u30b8\u30fc\u4f01\u696d\u3067\u3042\u308bSarepta\u793e\u3068Myonexus\u793e\u306e\u5951\u7d04\u8abf\u5370\u5f0f\u306b\u53c2\u52a0\u3057\u307e\u3057\u305f\u3002\u305d\u306e\u4ed6\u306e\u6d3b\u52d5\u3068\u3057\u3066\u306f\u3001\u30c8\u30ec\u30c3\u30ad\u30f3\u30b0\u30c1\u30a7\u30a2\u3092\u4f7f\u7528\u3057\u305f\u5c71\u3078\u306e\u65c5\u884c\u3084\u305d\u306e\u4ed6\u306e\u30b9\u30dd\u30fc\u30c4\uff08\u30b9\u30ab\u30a4\uff09\u3001\u969c\u5bb3\u8005\u306e\u305f\u3081\u306e\u30ec\u30af\u30ea\u30a8\u30fc\u30b7\u30e7\u30f3\u6d3b\u52d5\u306e\u4f01\u753b\u3001\u30b8\u30fc\u30a8\u30d5\u30d3\u30fc\u30aa\u30f3\u30e9\u30b9\u306e\u5bb6\u65cf\u306e\u5e74\u6b21\u7dcf\u4f1a\u306e\u958b\u50ac\u3001\u516c\u7684\u6a5f\u95a2\u3068\u306e\u5354\u5b9a\u3092\u901a\u3058\u305f\u969c\u5bb3\u8005\u306e\u305f\u3081\u306e\u8f38\u9001\u30b5\u30fc\u30d3\u30b9\u3001LGMD2E\u304a\u3088\u3073\u305d\u306e\u4ed6\u306e\u30b5\u30eb\u30b3\u30b0\u30ea\u30ab\u30f3\u75c5\u306b\u95a2\u3059\u308b\u56fd\u969b\u5b66\u8853\u4f1a\u8b70\u306e\u958b\u50ac\u3001\u969c\u5bb3\u8005\u306e\u305f\u3081\u306e\u5fc3\u7406\u7684\u30b5\u30dd\u30fc\u30c8\u306a\u3069\u304c\u3042\u308b\u3002<\/p>\n

\u3042\u306a\u305f\u306e\u7d44\u7e54\u306f\u4f55\u3092\u6700\u3082\u8a87\u308a\u306b\u601d\u3063\u3066\u3044\u307e\u3059\u304b\uff1a<\/strong><\/p>\n

\u7c73\u56fd\u30aa\u30cf\u30a4\u30aa\u5dde\u30b3\u30ed\u30f3\u30d0\u30b9\u306eJ. Mendell\u6559\u6388\u304c\u30b3\u30fc\u30c7\u30a3\u30cd\u30fc\u30c8\u3059\u308bLgmd2e\u907a\u4f1d\u5b50\u6cbb\u7642\u30d7\u30ed\u30b8\u30a7\u30af\u30c8\u306e\u524d\u81e8\u5e8a\u6bb5\u968e\uff08$ 130\u4e07\u30c9\u30eb\uff09\u306b\u8cc7\u91d1\u3092\u63d0\u4f9b\u3057\u3001Myonexus Therapeutics\u793e\u306b\u53c2\u753b\u3057\u3001Sarepta\u793e\u3068Myonexus\u793e\u306e\u9593\u3067\u5951\u7d04\u3092\u7de0\u7d50\u3059\u308b\u3002<\/p>\n

\u3042\u306a\u305f\u306e\u7d44\u7e54\u306b\u3064\u3044\u3066\u3001\u4e16\u754c\u306b\u4f55\u3092\u77e5\u3063\u3066\u3082\u3089\u3044\u305f\u3044\u3067\u3059\u304b\uff1f<\/strong>:<\/p>\n

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