{"id":3502,"date":"2014-07-30T22:47:56","date_gmt":"2014-07-30T22:47:56","guid":{"rendered":"https:\/\/lpfch.org\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/"},"modified":"2024-09-10T22:21:19","modified_gmt":"2024-09-10T22:21:19","slug":"heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder","status":"publish","type":"post","link":"https:\/\/lpfch.org\/ja\/impact-stories\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/","title":{"rendered":"\u300cHeal EB\u300d\u3068\u30a8\u30c7\u30a3\u3068\u30b8\u30eb\u30fb\u30f4\u30a7\u30c0\u30fc\u306f\u3001\u547d\u306b\u95a2\u308f\u308b\u76ae\u819a\u75be\u60a3\u3092\u60a3\u3046\u5b50\u4f9b\u305f\u3061\u306e\u6cbb\u7642\u8cc7\u91d1\u3092\u63f4\u52a9\u3057\u3066\u3044\u308b\u3002"},"content":{"rendered":"

\u5357\u30ab\u30ea\u30d5\u30a9\u30eb\u30cb\u30a2\u306b\u62e0\u70b9\u3092\u7f6e\u304f\u975e\u55b6\u5229\u56e3\u4f53Heal EB\uff08www.healeb.org\uff09\u306f\u3001\u7a00\u5c11\u3067\u751f\u547d\u3092\u8105\u304b\u3059\u907a\u4f1d\u6027\u76ae\u819a\u75be\u60a3\u3067\u3042\u308b\u8868\u76ae\u6c34\u75b1\u75c7\uff08EB\uff09\u306e\u6cbb\u7642\u6cd5\u958b\u767a\u306b\u5411\u3051\u305f\u65b0\u305f\u306a\u4e00\u6b69\u3068\u3057\u3066\u3001\u30b9\u30bf\u30f3\u30d5\u30a9\u30fc\u30c9\u5927\u5b66\u533b\u5b66\u90e8\u76ae\u819a\u79d1\u304a\u3088\u3073\u5c0f\u5150\u79d1\u306e\u540d\u8a89\u6559\u6388\u3067\u3042\u308b\u30a2\u30eb\u30d5\u30ec\u30c3\u30c9\u30fb\u30ec\u30fc\u30f3\u533b\u5e2b\u306e\u7814\u7a76\u3092\u652f\u63f4\u3059\u308b\u305f\u3081\u3001$5\u4e07\u30dd\u30f3\u30c9\u3092\u5bc4\u4ed8\u3057\u307e\u3057\u305f\u3002\u30ec\u30fc\u30f3\u533b\u5e2b\u306f\u3001EB\u60a3\u8005\u306e\u76ae\u819a\u3092\u8a55\u4fa1\u3057\u3001\u76ae\u819a\u751f\u691c\u306e\u5fc5\u8981\u6027\u3092\u6e1b\u3089\u3059\u305f\u3081\u306e\u65b0\u6280\u8853\u306e\u958b\u767a\u306b\u5411\u3051\u305f\u81e8\u5e8a\u8a66\u9a13\u3092\u4e3b\u5c0e\u3057\u3066\u3044\u307e\u3059\u3002\u307e\u305f\u3001\u3053\u306e\u5c02\u9580\u77e5\u8b58\u3092\u6301\u3064\u5168\u7c73\u3067\u3082\u6570\u5c11\u306a\u3044\u75c5\u9662\u306e\u4e00\u3064\u3067\u3042\u308b\u30eb\u30b7\u30fc\u30eb\u30fb\u30d1\u30c3\u30ab\u30fc\u30c9\u30fb\u30b9\u30bf\u30f3\u30d5\u30a9\u30fc\u30c9\u5c0f\u5150\u75c5\u9662\u3067\u3082\u3001EB\u3092\u60a3\u3046\u5b50\u4f9b\u305f\u3061\u306e\u6cbb\u7642\u306b\u643a\u308f\u3063\u3066\u3044\u307e\u3059\u3002<\/span><\/p>\n

\u73fe\u5728\u9032\u884c\u4e2d\u306e\u8a66\u9a13\u306b\u306f\u3001EB\u60a3\u8005\u306e\u5275\u50b7\u90e8\u306b\u79fb\u690d\u53ef\u80fd\u306a\u65b0\u3057\u3044\u76ae\u819a\u3092\u300c\u6210\u9577\u300d\u3055\u305b\u308b\u305f\u3081\u306b\u5e79\u7d30\u80de\u3092\u7528\u3044\u308b\u8a66\u9a13\u304c\u542b\u307e\u308c\u3066\u3044\u307e\u3059\u3002\u79fb\u690d\u304c\u6210\u529f\u3059\u308c\u3070\u3001\u4f53\u5185\u3067\u30a2\u30f3\u30ab\u30fc\u7dda\u7dad\u304c\u751f\u6210\u3055\u308c\u3001\u65e2\u5b58\u306e\u76ae\u819a\u3068\u79fb\u690d\u7247\u3068\u306e\u30b7\u30fc\u30e0\u30ec\u30b9\u306a\u63a5\u7d9a\u304c\u4fc3\u9032\u3055\u308c\u307e\u3059\u3002\u3082\u3046\u4e00\u3064\u306e\u9032\u6b69\u306e\u5146\u5019\u306f\u3001\u79fb\u690d\u7247\u306e\u57fa\u5e95\u90e8\u306b\u7d50\u5408\u7d44\u7e54\u306b\u542b\u307e\u308c\u308b\u69cb\u9020\u30bf\u30f3\u30d1\u30af\u8cea\u3067\u3042\u308b\u30b3\u30e9\u30fc\u30b2\u30f3\u304c\u5b58\u5728\u3059\u308b\u3053\u3068\u3067\u3059\u3002\u8a66\u9a13\u671f\u9593\u4e2d\u3001\u7c73\u56fd\u98df\u54c1\u533b\u85ac\u54c1\u5c40\uff08FDA\uff09\u306f\u7814\u7a76\u30c1\u30fc\u30e0\u306b\u5bfe\u3057\u3001\u6cbb\u7642\u52b9\u679c\u306e\u8ffd\u8de1\u8abf\u67fb\u3092\u7fa9\u52d9\u4ed8\u3051\u3066\u304a\u308a\u3001\u305d\u306e\u305f\u3081\u306b\u306f\u3057\u3070\u3057\u3070\u6cbb\u7642\u90e8\u4f4d\u306e\u75db\u307f\u3092\u4f34\u3046\u751f\u691c\u304c\u5fc5\u8981\u3068\u306a\u308a\u307e\u3059\u3002<\/p>\n

Heal EB\u304b\u3089\u306e\u8cc7\u91d1\u63d0\u4f9b\u3092\u53d7\u3051\u3066\u3001\u30ec\u30fc\u30f3\u6c0f\u306e\u30c1\u30fc\u30e0\u306f\u3001\u751f\u691c\u3088\u308a\u3082\u4fb5\u8972\u6027\u304c\u4f4e\u304f\u75db\u307f\u3082\u5c11\u306a\u304f\u3001\u81e8\u5e8a\u8a66\u9a13\u3067\u30c6\u30b9\u30c8\u3055\u308c\u3066\u3044\u308b\u624b\u6cd5\u306e\u6709\u52b9\u6027\u3092\u8a55\u4fa1\u3059\u308b\u305f\u3081\u306b\u5fc5\u8981\u306a\u8868\u9762\u7a4d\u3092\u5236\u9650\u3059\u308b\u6e2c\u5b9a\u30c4\u30fc\u30eb\u306e\u958b\u767a\u306b\u53d6\u308a\u7d44\u3080\u4e88\u5b9a\u3060\u3002<\/p>\n

Heal EB\u306e\u5171\u540c\u5275\u8a2d\u8005\u3067\u3042\u308a\u3001\u770b\u8b77\u5e2b\u3067\u3042\u308a\u3001EB\u3092\u60a3\u3046\u5e7c\u3044\u5b50\u3069\u3082\u306e\u6bcd\u89aa\u3067\u3082\u3042\u308b\u30d8\u30b6\u30fc\u30fb\u30d5\u30eb\u30de\u30fc\u6c0f\u306f\u3001\u300c\u3088\u308a\u8ca0\u62c5\u306e\u5c11\u306a\u3044\u30c7\u30d0\u30a4\u30b9\u3078\u306e\u8cc7\u91d1\u63d0\u4f9b\u306f\u3001\u79c1\u305f\u3061\u306b\u3068\u3063\u3066\u6700\u512a\u5148\u4e8b\u9805\u3067\u3059\u3002\u6e2c\u5b9a\u30c7\u30d0\u30a4\u30b9\u306e\u958b\u767a\u306b\u3088\u308a\u3001\u81e8\u5e8a\u533b\u306f\u76ae\u819a\u8868\u9762\u306b\u5927\u304d\u306a\u5916\u50b7\u3092\u4e0e\u3048\u308b\u3053\u3068\u306a\u304f\u3001\u6cbb\u7642\u52b9\u679c\u3092\u3088\u308a\u78ba\u5b9f\u304b\u3064\u6b63\u78ba\u306b\u6e2c\u5b9a\u3067\u304d\u308b\u3088\u3046\u306b\u306a\u308a\u307e\u3059\u3002\u73fe\u5728\u3001EB\u3092\u60a3\u3046\u5b50\u3069\u3082\u305f\u3061\u306b\u5927\u304d\u306a\u5f71\u97ff\u3092\u4e0e\u3048\u308b\u8a66\u9a13\u3067\u306f\u3001\u8907\u6570\u56de\u306e\u6e2c\u5b9a\u304c\u5fc5\u8981\u3067\u3059\u3002\u3053\u3046\u3057\u305f\u81e8\u5e8a\u8a66\u9a13\u306e\u8fc5\u901f\u5316\u306b\u5f79\u7acb\u3064\u30c7\u30d0\u30a4\u30b9\u306e\u958b\u767a\u306b\u643a\u308f\u308c\u308b\u3053\u3068\u3092\u5149\u6804\u306b\u601d\u3044\u307e\u3059\u300d\u3068\u8ff0\u3079\u3066\u3044\u307e\u3059\u3002<\/p>\n

Heal EB\u306eCOO\u3001\u30b8\u30eb\u30fb\u30f4\u30a7\u30c0\u30fc\u6c0f\u306f\u3001\u592b\u3067\u30d1\u30fc\u30eb\u30fb\u30b8\u30e3\u30e0\u306e\u30ea\u30fc\u30c9\u30b7\u30f3\u30ac\u30fc\u3067\u3042\u308b\u30a8\u30c7\u30a3\u30fb\u30f4\u30a7\u30c0\u30fc\u6c0f\u3068\u5171\u306b\u3001Heal EB\u8ca1\u56e3\u306e\u7406\u4e8b\u3092\u52d9\u3081\u3089\u308c\u308b\u3053\u3068\u3092\u8a87\u308a\u306b\u601d\u3046\u3068\u4ed8\u3051\u52a0\u3048\u307e\u3057\u305f\u3002\u30d5\u30eb\u30de\u30fc\u592b\u59bb\u306e\u304a\u5b50\u3055\u3093\u3068\u306e\u7e4b\u304c\u308a\u304c\u3001EB\u3092\u60a3\u3046\u4e16\u754c\u4e2d\u306e\u5b50\u3069\u3082\u305f\u3061\u306e\u751f\u6d3b\u6539\u5584\u306b\u5411\u3051\u305f\u6d3b\u52d5\u306e\u539f\u52d5\u529b\u3068\u306a\u3063\u3066\u3044\u307e\u3059\u3002<\/p>\n

\u300c\u3053\u306e\u75c5\u6c17\u304c\u5e7c\u3044\u606f\u5b50\u306b\u53ca\u307c\u3059\u5f71\u97ff\u3084\u3001\u5f7c\u306e\u9a5a\u304f\u3079\u304d\u5f37\u3055\u3068\u56de\u5fa9\u529b\u3092\u76ee\u306e\u5f53\u305f\u308a\u306b\u3059\u308b\u3053\u3068\u3067\u3001\u79c1\u305f\u3061\u306f\u8cc7\u91d1\u96c6\u3081\u3068\u6cbb\u7642\u6cd5\u306e\u767a\u898b\u306b\u5411\u3051\u3066\u65e5\u3005\u52aa\u529b\u3059\u308b\u610f\u6b32\u3092\u71c3\u3084\u3057\u3066\u3044\u307e\u3059\u300d\u3068\u30f4\u30a7\u30c0\u30fc\u6c0f\u306f\u8a9e\u3063\u305f\u3002<\/p>\n

Heal EB\u304b\u3089\u306e\u5bc4\u4ed8\u306f\u3001\u6628\u79cb\u30de\u30ea\u30d6\u3067\u958b\u50ac\u3055\u308c\u305f\u30c1\u30e3\u30ea\u30c6\u30a3\u30fc\u30a4\u30d9\u30f3\u30c8\u306b\u3088\u3063\u3066\u5b9f\u73fe\u3057\u307e\u3057\u305f\u3002Heal EB\u306f\u4eca\u56de\u306e\u5bc4\u4ed8\u306b\u5148\u7acb\u3061\u3001\u8a2d\u7acb\u521d\u5e74\u5ea6\u306b\u96c6\u3081\u3089\u308c\u305f\u8cc7\u91d1\u304b\u3089\u30012013\u5e74\u306b\u30ec\u30fc\u30f3\u306e\u907a\u4f1d\u5b50\u79fb\u5165\u8a66\u9a13\u306b$95,000\u3092\u5bc4\u4ed8\u3057\u307e\u3057\u305f\u3002<\/p>\n

\u30f4\u30a7\u30c0\u30fc\u30ba\u306e\u3088\u3046\u306a\u5b50\u4f9b\u305f\u3061\u306e\u64c1\u8b77\u8005\u306b\u306a\u308a\u3001 \u52df\u91d1\u30a4\u30d9\u30f3\u30c8\u3092\u8a08\u753b\u3059\u308b<\/a> \u4eca\u65e5\uff01<\/p>","protected":false},"excerpt":{"rendered":"

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