{"id":9482,"date":"2021-01-05T23:20:58","date_gmt":"2021-01-06T04:20:58","guid":{"rendered":"https:\/\/nebula.org\/blog\/%e5%b8%8c%e5%b0%91%e7%96%be%e6%82%a3%e3%81%ae%e6%97%a5\/"},"modified":"2021-02-20T20:36:43","modified_gmt":"2021-02-21T01:36:43","slug":"%e5%b8%8c%e5%b0%91%e7%96%be%e6%82%a3%e3%81%ae%e6%97%a5","status":"publish","type":"post","link":"https:\/\/nebula.org\/blog\/ja\/%e5%b8%8c%e5%b0%91%e7%96%be%e6%82%a3%e3%81%ae%e6%97%a5\/","title":{"rendered":"\u4e16\u754c\u5e0c\u5c11\u75be\u60a3\u306e\u65e5\uff1a\u5e0c\u5c11\u3067\u3042\u308b\u3053\u3068\u306e\u610f\u5473"},"content":{"rendered":"\n<p><em>Christina Swords\u3001Ph.D\u3002\u304c\u7de8\u96c6<\/em><\/p>\n\n<h2 class=\"wp-block-heading\" id=\"h-for-rare-disease-patients-it-s-the-not-knowing-that-hits-the-hardest\">\u5e0c\u5c11\u75be\u60a3\u306e\u60a3\u8005\u306b\u3068\u3063\u3066\u3001\u6700\u3082\u5927\u304d\u306a\u6253\u6483\u3092\u4e0e\u3048\u308b\u306e\u306f\u77e5\u3089\u306a\u3044\u3053\u3068\u3067\u3059\u3002<\/h2>\n\n<p><\/p>\n\n<p>\u75c5\u6c17\u306f\u5f7c\u3089\u306e\u4f53\u306e\u6a5f\u80fd\u3092\u3069\u306e\u3088\u3046\u306b\u5909\u3048\u307e\u3059\u304b\uff1f \u5e0c\u5c11\u75be\u60a3\u306e\u308f\u305a\u304b5\uff05\u304cFDA\u627f\u8a8d\u306e\u6cbb\u7642\u3092\u53d7\u3051\u3066\u3044\u308b\u5834\u5408\u3001\u3069\u306e\u3088\u3046\u306a\u85ac\u304c\u4f7f\u7528\u3055\u308c\u307e\u3059\u304b\uff1f 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\u4e16\u754c\u5e0c\u5c11\u75be\u60a3\u306e\u65e5\u306f\u6bce\u5e742\u6708\u306e\u6700\u7d42\u65e5\u306b\u958b\u50ac\u3055\u308c\u3001\u30bd\u30fc\u30b7\u30e3\u30eb\u30e1\u30c7\u30a3\u30a2\u3001\u7acb\u6cd5\u4f1a\u8b70\u3001\u30b3\u30df\u30e5\u30cb\u30c6\u30a3\u30a4\u30d9\u30f3\u30c8\u3067\u53d6\u308a\u4e0a\u3052\u3089\u308c\u3001\u5e0c\u5c11\u75be\u60a3\u3092\u6301\u3064\u4eba\u3005\u306e\u751f\u6d3b\u3068\u76f4\u9762\u3059\u308b\u8ab2\u984c\u306b\u3064\u3044\u3066\u4e00\u822c\u306e\u4eba\u3005\u306e\u610f\u8b58\u3092\u9ad8\u3081\u308b\u3053\u3068\u3092\u76ee\u7684\u3068\u3057\u3066\u3044\u307e\u3059\u3002 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href=\"https:\/\/nebula.org\/whole-genome-sequencing\/\">\u661f\u96f2\u30b2\u30ce\u30df\u30af\u30b9<\/a><\/strong>\u533b\u7642\u306e\u98db\u8e8d\u7684\u9032\u6b69\u3092\u52a0\u901f\u3059\u308b\u305f\u3081\u306b\u3001\u8907\u6570\u306e\u5e0c\u5c11\u75be\u60a3\u7d44\u7e54\u3068\u306e\u30b3\u30e9\u30dc\u30ec\u30fc\u30b7\u30e7\u30f3\u3092\u958b\u59cb\u3057\u307e\u3057\u305f\u3002<br\/><\/p>\n\n<p>\u79d1\u5b66\u754c\u306f\u3001\u75c5\u6c17\u306e\u6b63\u78ba\u306a\u539f\u56e0\u306b\u3064\u3044\u3066\u30d2\u30c8\u30b2\u30ce\u30e0\u3092\u5206\u6790\u3057\u3066\u3044\u308b\u7d42\u308f\u308a\u306e\u306a\u3044\u30d7\u30ed\u30b8\u30a7\u30af\u30c8\u3092\u8abf\u6574\u3059\u308b\u3053\u3068\u3092\u5b9f\u884c\u3057\u59cb\u3081\u307e\u3057\u305f\u3002 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\u3053\u308c\u3089\u306e\u969c\u58c1\u306b\u306f\u3001\u30a2\u30af\u30bb\u30b9\u3001\u60a3\u8005\u306e\u30d7\u30e9\u30a4\u30d0\u30b7\u30fc\u306e\u4fdd\u8b77\u3001\u79d1\u5b66\u30b3\u30df\u30e5\u30cb\u30c6\u30a3\u304b\u3089\u60a3\u8005\u30b3\u30df\u30e5\u30cb\u30c6\u30a3\u3078\u306e\u767a\u898b\u306b\u95a2\u3059\u308b\u7d99\u7d9a\u7684\u306a\u66f4\u65b0\u3001\u304a\u3088\u3073\u60a3\u8005\u306b\u5f7c\u3089\u304c\u5024\u3059\u308b\u5c0a\u656c\u3068\u4fe1\u983c\u3092\u4e0e\u3048\u308b\u305f\u3081\u306e\u6bd4\u985e\u306e\u306a\u3044\u900f\u660e\u6027\u304c\u542b\u307e\u308c\u307e\u3059\u3002<br\/><\/p>\n\n<p>\u6700\u7d42\u7684\u306b\u3001Nebula\u306f\u3001\u60a3\u8005\u306e\u8ca2\u732e\u3092\u88dc\u511f\u3057\u306a\u304c\u3089\u3001\u500b\u4eba\u306e\u30b2\u30ce\u30e0\u30c7\u30fc\u30bf\u3092\u533b\u5b66\u7814\u7a76\u8005\u3068\u5171\u6709\u3059\u308b\u305f\u3081\u306e\u30b7\u30f3\u30d7\u30eb\u3067\u4fbf\u5229\u3067\u5b89\u5168\u306a\u65b9\u6cd5\u3092\u4f5c\u6210\u3057\u3088\u3046\u3068\u3057\u3066\u3044\u307e\u3059\u3002 \u6765\u5e74\u306f\u3001\u6b21\u306e\u3088\u3046\u306a\u7d44\u7e54\u3068\u5354\u529b\u3057\u307e\u3059\u3002<strong><a href=\"http:\/\/www.globalgenes.org\">\u30b0\u30ed\u30fc\u30d0\u30eb\u907a\u4f1d\u5b50<\/a><\/strong>\u3001<strong><a href=\"http:\/\/www.rareadvocacymovement.org\">\u307e\u308c\u306a\u30a2\u30c9\u30dc\u30ab\u30b7\u30fc\u904b\u52d5<\/a><\/strong><a href=\"http:\/\/www.rareadvocacymovement.org\">\u3001<\/a><a href=\"http:\/\/www.themighty.com\"> <\/a><strong><a href=\"http:\/\/www.themighty.com\">\u5f37\u5927\u306a<\/a><\/strong>\u3001\u304a\u3088\u3073<strong><a href=\"http:\/\/www.inspire.com\">\u30a4\u30f3\u30b9\u30d1\u30a4\u30a2<\/a><\/strong><a href=\"http:\/\/www.inspire.com\"> <\/a>\u5f53\u793e\u306e\u30b7\u30fc\u30b1\u30f3\u30b9\u30b5\u30fc\u30d3\u30b9\u304a\u3088\u3073\u5f53\u793e\u306e\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3092\u4f7f\u7528\u3059\u308b\u60a3\u8005\u306e\u5168\u4f53\u7684\u306a\u7d4c\u9a13\u306b\u95a2\u3059\u308b\u30d5\u30a3\u30fc\u30c9\u30d0\u30c3\u30af\u3092\u53ce\u96c6\u3059\u308b\u305f\u3081\u3002<br\/><\/p>\n\n<p>\u3042\u306a\u305f\u304c\u5e0c\u5c11\u75be\u60a3\u3068\u8a3a\u65ad\u3055\u308c\u305f\u6570\u5341\u4e07\u4eba\u306e\u4e00\u4eba\u3067\u3042\u308d\u3046\u3068\u3001\u5e0c\u5c11\u75be\u60a3\u60a3\u8005\u30b0\u30eb\u30fc\u30d7\u306e\u30e1\u30f3\u30d0\u30fc\u3067\u3042\u308d\u3046\u3068\u3001\u4eba\u751f\u3092\u5909\u3048\u308b\u624b\u52a9\u3051\u3092\u3057\u305f\u3044\u4eba\u3067\u3042\u308d\u3046\u3068\u3001\u3042\u306a\u305f\u3082\u91cd\u8981\u306a\u5f79\u5272\u3092\u679c\u305f\u3059\u3053\u3068\u304c\u3067\u304d\u307e\u3059\u3053\u306e\u91cd\u8981\u306a\u65e5\u306b\u3002<\/p>\n\n<p>\u661f\u96f2\u306e\u5e0c\u5c11\u75be\u60a3\u30a4\u30cb\u30b7\u30a2\u30c1\u30d6\u306e\u8a73\u7d30\u306b\u3064\u3044\u3066\u306f\u3001\u30d7\u30ec\u30b9\u30ea\u30ea\u30fc\u30b9\u3092\u3054\u89a7\u304f\u3060\u3055\u3044\u3002<a href=\"https:\/\/www.businesswire.com\/news\/home\/20190228005064\/en\/Nebula-Genomics-Recognizes-World-Rare-Disease-Day\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"here (opens in a new tab)\">\u3053\u3053\u306b<\/a>\u307e\u305f\u306f\u3001\u4ee5\u4e0b\u306e\u30ea\u30f3\u30af\u3092\u8abf\u3079\u3066\u3001\u307e\u308c\u3067\u3042\u308b\u3053\u3068\u306e\u610f\u5473\u306b\u3064\u3044\u3066\u8a73\u3057\u304f\u5b66\u3093\u3067\u304f\u3060\u3055\u3044\u3002<br\/><\/p>\n\n<h4 class=\"wp-block-heading\" id=\"h-win-a-free-whole-genome-sequencing-kit-by-entering-our-giveaways-below\">\u4ee5\u4e0b\u306e\u666f\u54c1\u3092\u5165\u529b\u3057\u3066\u3001\u7121\u6599\u306e\u5168\u30b2\u30ce\u30e0\u30b7\u30fc\u30b1\u30f3\u30b9\u30ad\u30c3\u30c8\u3092\u7372\u5f97\u3057\u3066\u304f\u3060\u3055\u3044\u3002<\/h4>\n\n<p><a href=\"https:\/\/globalgenes.org\/nebula-giveaway\/%20\">\u30b0\u30ed\u30fc\u30d0\u30eb\u907a\u4f1d\u5b50\u3068\u661f\u96f2\u30b2\u30ce\u30df\u30af\u30b9\u30b7\u30fc\u30b1\u30f3\u30b9\u30d7\u30ec\u30bc\u30f3\u30c8<\/a><\/p>\n\n<p><a href=\"https:\/\/www.rareadvocacymovement.com\/genome-sequencing-giveaway\">\u73cd\u3057\u3044\u30a2\u30c9\u30dc\u30ab\u30b7\u30fc\u904b\u52d5\u3068\u661f\u96f2\u30b2\u30ce\u30df\u30af\u30b9\u30b7\u30fc\u30b1\u30f3\u30b9\u30d7\u30ec\u30bc\u30f3\u30c8<\/a><\/p>\n\n<p>Mighty\uff06Nebula Genomics SequencingGiveaway<\/p>\n\n<p><\/p>\n\n<p><strong>\u30ea\u30bd\u30fc\u30b9<\/strong><\/p>\n\n<p>\u5e0c\u5c11\u75be\u60a3\u306b\u95a2\u3059\u308b\u4e8b\u5b9f\u3092<a href=\"http:\/\/www.globalgenes.org\"><strong>\u30b0\u30ed\u30fc\u30d0\u30eb\u907a\u4f1d\u5b50\u3002<\/strong><\/a><\/p>\n\n<p>\u8a73\u7d30\u306b\u3064\u3044\u3066\u306f<a href=\"http:\/\/www.therareadvocacymovement.com\"><strong>\u307e\u308c\u306a\u30a2\u30c9\u30dc\u30ab\u30b7\u30fc\u904b\u52d5\u3002<\/strong><\/a><\/p>\n\n<p>\u3042\u306a\u305f\u306e\u5e0c\u5c11\u75be\u60a3\u306e\u8a71\u3092<strong><a href=\"http:\/\/www.themighty.com\"><strong>\u5f37\u5927\u306a\u3002<\/strong><\/a><\/strong><\/p>\n\n<p>\u3067\u3042\u306a\u305f\u306e\u5e0c\u5c11\u75be\u60a3\u30b3\u30df\u30e5\u30cb\u30c6\u30a3\u3092\u898b\u3064\u3051\u3066\u304f\u3060\u3055\u3044<strong><a href=\"http:\/\/www.inspire.com\"><strong>Inspire.com\u3002<\/strong><\/a><\/strong><br\/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u4eca\u65e5\u3001\u4e16\u754c\u306f\u56fd\u969b\u7684\u306a\u4e16\u754c\u5e0c\u5c11\u75be\u60a3\u306e\u65e5\u306b\u3053\u308c\u3089\u306e\u60a3\u8005\u306b\u6ce8\u610f\u3092\u5411\u3051\u3066\u3044\u307e\u3059\u3002 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She received a B.S. in Biology and Chemistry from King\u2019s College in Wilkes-Barre, PA, and a Ph.D. in Biological Chemistry from the University of North Carolina in Chapel Hill. Christina is an experienced science communicator, writer, and project manager with demonstrated communication experience with Morehead Planetarium and Science Center, the American Society for Biochemistry and Molecular Biology (ASBMB) science outreach and communication committee. 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