[{"@context":"http:\/\/schema.org\/","@type":"BlogPosting","@id":"https:\/\/wiki.edu.vn\/jp\/wiki7\/archives\/3748#BlogPosting","mainEntityOfPage":"https:\/\/wiki.edu.vn\/jp\/wiki7\/archives\/3748","headline":"\u4e16\u754c\u5e0c\u5c11\u30fb\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u65e5 – Wikipedia","name":"\u4e16\u754c\u5e0c\u5c11\u30fb\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u65e5 – Wikipedia","description":"before-content-x4 \u4e16\u754c\u5e0c\u5c11\u30fb\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u65e5\uff08\u305b\u304b\u3044\u304d\u3057\u3087\u3046\u30fb\u306a\u3093\u3061\u305b\u3044\u3057\u3063\u304b\u3093\u306e\u3072\u3001\u82f1: Rare Disease Day, RDD\uff09\u306f\u3001\u5e0c\u5c11\u75be\u60a3\u3001\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u5553\u767a\u3092\u76ee\u7684\u3068\u3057\u3066\u3001\u4e16\u754c\u7684\u898f\u6a21\u3067\u6bce\u5e742\u6708\u672b\u65e5\uff08\u5e73\u5e74\uff1a2\u670828\u65e5\u3001\u958f\u5e74\uff1a2\u670829\u65e5\uff09\u306b\u958b\u50ac\u3055\u308c\u3066\u3044\u308b “Rare Disease Day” \u306e\u3001\u65e5\u672c\u3067\u306e\u6b63\u5f0f\u540d\u79f0\u3067\u3042\u308b[1][2]\u3002 after-content-x4 \u300c\u4e16\u754c\u5e0c\u5c11\u75be\u60a3\u306e\u65e5\u300d\u3067\u306f\u306a\u304f\u3001\u300c\u4e16\u754c\u5e0c\u5c11\u30fb\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u65e5\u300d\u3068\u306a\u3063\u305f\u306e\u306f\u3001\u6b27\u7c73\u306b\u304a\u3051\u308b\u5e0c\u5c11\u75be\u60a3\u3068\u3044\u3046\u547c\u79f0\u3068\u5225\u306b\u3001\u65e5\u672c\u306b\u304a\u3044\u3066\u96e3\u75c5\u3001\u96e3\u6cbb\u6027\u75be\u60a3\u3068\u3044\u3046\u547c\u79f0\u304c\u3001\u5f93\u6765\u3088\u308a\u7528\u3044\u3089\u308c\u3066\u304d\u305f\u3053\u3068\u306b\u3088\u308b\u3068\u601d\u308f\u308c\u308b\u304c\u3001\u516c\u958b\u3055\u308c\u305f\u8a18\u9332\u306f\u306a\u3044\u3002 \u65e5\u672c\u3067\u306e\u958b\u50ac\u4e8b\u52d9\u5c40\u306f\u30012015\u5e74\u958b\u50ac\u3088\u308a\u7279\u5b9a\u975e\u55b6\u5229\u6d3b\u52d5\u6cd5\u4ebaASrid\u5185\u306b\u304a\u304b\u308c\u3066\u3044\u308b[3]\u3002 2014\u5e74\u306b\u306f\u4e16\u754c84\u30f6\u56fd\u306b\u3066\u3001RDD\u306b\u95a2\u4fc2\u3059\u308b1,000\u4ee5\u4e0a\u306e\u30a4\u30d9\u30f3\u30c8\u304c\u958b\u50ac\u3055\u308c\u3001\u305d\u306e\u3046\u3061410\u304cRDD\u4e16\u754c\u4e8b\u52d9\u5c40\u304c\u516c\u8a8d\u3057\u305f\u30a4\u30d9\u30f3\u30c8\u3067\u3042\u308b[1]\u3002 after-content-x4 \u65e5\u672c\u306f2010\u5e74\uff08\u5e73\u621022\u5e74\uff09\u304b\u3089\u516c\u5f0f\u306b\u53c2\u52a0\u3057\u305f\u3002 2\u6708\u672b\u65e5\u306b\u958b\u50ac\u3059\u308b\u7531\u6765\u3068\u3057\u3066\u3001\u300c4\u5e74\u306b\u4e00\u5ea6\u306e\u958f\u5e74\u306e\u307f\u306b\u8a2d\u3051\u3089\u308c\u3066\u3044\u308b2\u670829\u65e5\u304c\u6700\u3082\u300e\u5e0c\u300f\u306a\u65e5\u3068\u3057\u3066\u8c61\u5fb4\u7684\u3067\u3042\u3063\u305f\u3053\u3068\u306b\u3088\u308b\u300d\u3068\u8a18\u8ff0\u304c\u3042\u308b[4][5]\u3002 2008\u5e74\u306b\u30e8\u30fc\u30ed\u30c3\u30d1\u306b\u304a\u3051\u308b\u5e0c\u5c11\u75be\u60a3\u306e\u60a3\u8005\u4f1a\u306e\u7d71\u5408\u7d44\u7e54\u3067\u3042\u308ben:European Organisation for","datePublished":"2020-03-14","dateModified":"2020-03-14","author":{"@type":"Person","@id":"https:\/\/wiki.edu.vn\/jp\/wiki7\/archives\/author\/lordneo#Person","name":"lordneo","url":"https:\/\/wiki.edu.vn\/jp\/wiki7\/archives\/author\/lordneo","image":{"@type":"ImageObject","@id":"https:\/\/secure.gravatar.com\/avatar\/c9645c498c9701c88b89b8537773dd7c?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/c9645c498c9701c88b89b8537773dd7c?s=96&d=mm&r=g","height":96,"width":96}},"publisher":{"@type":"Organization","name":"Enzyklop\u00e4die","logo":{"@type":"ImageObject","@id":"https:\/\/wiki.edu.vn\/wiki4\/wp-content\/uploads\/2023\/08\/download.jpg","url":"https:\/\/wiki.edu.vn\/wiki4\/wp-content\/uploads\/2023\/08\/download.jpg","width":600,"height":60}},"image":{"@type":"ImageObject","@id":"https:\/\/upload.wikimedia.org\/wikipedia\/commons\/thumb\/6\/68\/WorldRareDiseaseDaySatyajit.JPG\/240px-WorldRareDiseaseDaySatyajit.JPG","url":"https:\/\/upload.wikimedia.org\/wikipedia\/commons\/thumb\/6\/68\/WorldRareDiseaseDaySatyajit.JPG\/240px-WorldRareDiseaseDaySatyajit.JPG","height":"159","width":"240"},"url":"https:\/\/wiki.edu.vn\/jp\/wiki7\/archives\/3748","about":["Wiki"],"wordCount":819,"articleBody":"     (adsbygoogle = window.adsbygoogle || []).push({});before-content-x4\u4e16\u754c\u5e0c\u5c11\u30fb\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u65e5\uff08\u305b\u304b\u3044\u304d\u3057\u3087\u3046\u30fb\u306a\u3093\u3061\u305b\u3044\u3057\u3063\u304b\u3093\u306e\u3072\u3001\u82f1: Rare Disease Day, RDD\uff09\u306f\u3001\u5e0c\u5c11\u75be\u60a3\u3001\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u5553\u767a\u3092\u76ee\u7684\u3068\u3057\u3066\u3001\u4e16\u754c\u7684\u898f\u6a21\u3067\u6bce\u5e742\u6708\u672b\u65e5\uff08\u5e73\u5e74\uff1a2\u670828\u65e5\u3001\u958f\u5e74\uff1a2\u670829\u65e5\uff09\u306b\u958b\u50ac\u3055\u308c\u3066\u3044\u308b “Rare Disease Day” \u306e\u3001\u65e5\u672c\u3067\u306e\u6b63\u5f0f\u540d\u79f0\u3067\u3042\u308b[1][2]\u3002       (adsbygoogle = window.adsbygoogle || []).push({});after-content-x4\u300c\u4e16\u754c\u5e0c\u5c11\u75be\u60a3\u306e\u65e5\u300d\u3067\u306f\u306a\u304f\u3001\u300c\u4e16\u754c\u5e0c\u5c11\u30fb\u96e3\u6cbb\u6027\u75be\u60a3\u306e\u65e5\u300d\u3068\u306a\u3063\u305f\u306e\u306f\u3001\u6b27\u7c73\u306b\u304a\u3051\u308b\u5e0c\u5c11\u75be\u60a3\u3068\u3044\u3046\u547c\u79f0\u3068\u5225\u306b\u3001\u65e5\u672c\u306b\u304a\u3044\u3066\u96e3\u75c5\u3001\u96e3\u6cbb\u6027\u75be\u60a3\u3068\u3044\u3046\u547c\u79f0\u304c\u3001\u5f93\u6765\u3088\u308a\u7528\u3044\u3089\u308c\u3066\u304d\u305f\u3053\u3068\u306b\u3088\u308b\u3068\u601d\u308f\u308c\u308b\u304c\u3001\u516c\u958b\u3055\u308c\u305f\u8a18\u9332\u306f\u306a\u3044\u3002\u65e5\u672c\u3067\u306e\u958b\u50ac\u4e8b\u52d9\u5c40\u306f\u30012015\u5e74\u958b\u50ac\u3088\u308a\u7279\u5b9a\u975e\u55b6\u5229\u6d3b\u52d5\u6cd5\u4ebaASrid\u5185\u306b\u304a\u304b\u308c\u3066\u3044\u308b[3]\u30022014\u5e74\u306b\u306f\u4e16\u754c84\u30f6\u56fd\u306b\u3066\u3001RDD\u306b\u95a2\u4fc2\u3059\u308b1,000\u4ee5\u4e0a\u306e\u30a4\u30d9\u30f3\u30c8\u304c\u958b\u50ac\u3055\u308c\u3001\u305d\u306e\u3046\u3061410\u304cRDD\u4e16\u754c\u4e8b\u52d9\u5c40\u304c\u516c\u8a8d\u3057\u305f\u30a4\u30d9\u30f3\u30c8\u3067\u3042\u308b[1]\u3002       (adsbygoogle = window.adsbygoogle || []).push({});after-content-x4\u65e5\u672c\u306f2010\u5e74\uff08\u5e73\u621022\u5e74\uff09\u304b\u3089\u516c\u5f0f\u306b\u53c2\u52a0\u3057\u305f\u30022\u6708\u672b\u65e5\u306b\u958b\u50ac\u3059\u308b\u7531\u6765\u3068\u3057\u3066\u3001\u300c4\u5e74\u306b\u4e00\u5ea6\u306e\u958f\u5e74\u306e\u307f\u306b\u8a2d\u3051\u3089\u308c\u3066\u3044\u308b2\u670829\u65e5\u304c\u6700\u3082\u300e\u5e0c\u300f\u306a\u65e5\u3068\u3057\u3066\u8c61\u5fb4\u7684\u3067\u3042\u3063\u305f\u3053\u3068\u306b\u3088\u308b\u300d\u3068\u8a18\u8ff0\u304c\u3042\u308b[4][5]\u30022008\u5e74\u306b\u30e8\u30fc\u30ed\u30c3\u30d1\u306b\u304a\u3051\u308b\u5e0c\u5c11\u75be\u60a3\u306e\u60a3\u8005\u4f1a\u306e\u7d71\u5408\u7d44\u7e54\u3067\u3042\u308ben:European Organisation for Rare Diseases\uff08EURORDIS\uff09\u306b\u3088\u308a\u30b9\u30a6\u30a7\u30fc\u30c7\u30f3\u306b\u3066\u958b\u59cb\u3055\u308c\u305f[6][1]\u30022008\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”Rare diseases as a public health priority”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”A rare day for very special people”\u304c\u63b2\u3052\u3089\u308c\u305f[7]\u30022009\u5e74\u306b\u306f\u3001\u7c73\u56fd\u306b\u304a\u3051\u308b\u5e0c\u5c11\u75be\u60a3\u306e\u60a3\u8005\u4f1a\u306e\u7d71\u5408\u7d44\u7e54\u3067\u3042\u308ben:National Organization for Rare Disorders\uff08NORD\uff09\u306e\u53c2\u52a0\u3092\u53d7\u3051\u3066\u4e16\u754c\u7684\u306a\u30a4\u30d9\u30f3\u30c8\u3068\u306a\u3063\u305f[6]\u3002\u52a0\u3048\u3066\u3001en:Global Genes Project\u3092\u306f\u3058\u3081\u3068\u3057\u3066\u3001\u5404\u56fd\u306e\u5553\u767a\u56e3\u4f53\u3082\u591a\u304f\u53c2\u52a0\u3057\u305f\u30022009\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”a public health priority”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”Patient care: A public affair!”\u304c\u63b2\u3052\u3089\u308c\u305f[8]\u3002       (adsbygoogle = window.adsbygoogle || []).push({});after-content-x42010\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”Rare Diseases: A Public Health Priority”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”Patients and Researchers: Partners for Life!”\u304c\u63b2\u3052\u3089\u308c\u305f[9]\u3002\u5408\u8a0846\u30ab\u56fd\u304c\u53c2\u52a0\u3057\u3001\u65b0\u305f\u306b\u53c2\u52a0\u3057\u305f\u30d1\u30fc\u30c8\u30ca\u30fc\u3068\u3057\u3066\u65e5\u672c\u3068\u30d6\u30e9\u30b8\u30eb\u304c\u8a00\u53ca\u3055\u308c\u3066\u3044\u308b\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u958b\u50ac\u5831\u544a\u3082\u3042\u3052\u3089\u308c\u3066\u3044\u308b[10]\u30022011\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”Rare Diseases and Health Inequalities”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”Rare but Equal”\u304c\u63b2\u3052\u3089\u308c\u305f[11]\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u958b\u50ac\u5831\u544a\u3082\u3042\u3052\u3089\u308c\u3066\u3044\u308b[12]\u3002  2012\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”Solidarity”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”Rare but Strong Together!”\u304c\u63b2\u3052\u3089\u308c\u305f[13]\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u958b\u50ac\u5831\u544a\u3082\u3042\u3052\u3089\u308c\u3066\u3044\u308b[14]\u30022013\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”Solidarity”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”Rare Disorders without Borders”\u304c\u63b2\u3052\u3089\u308c\u305f[15]\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u958b\u50ac\u5831\u544a\u3082\u3042\u3052\u3089\u308c\u3066\u3044\u308b[16]2014\u5e74\u306f\u30019\u30ab\u56fd\u304c\u65b0\u305f\u306b\u53c2\u52a0\u3057\u3066\u5408\u8a0884\u30ab\u56fd\u306b\u4e0a\u3063\u305f[17]\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u958b\u50ac\u5831\u544a\u3082\u3042\u3052\u3089\u308c\u3066\u3044\u308b[18][19]\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066\u300e\u3088\u308a\u305d\u3046\u301cWE walk together with YOU\u301c\u300c\u5e0c\u5c11\u75be\u60a3\u30fb\u96e3\u75c5\u3092\u3068\u308a\u307e\u304f\u73fe\u72b6\u3092\u77e5\u3063\u3066\u3001\u60a3\u8005\u3055\u3093\u306e\u60f3\u3044\u306b\u5bc4\u308a\u6dfb\u3044\u3001\u60a3\u8005\u3055\u3093\u304c\u7b11\u9854\u3067\u751f\u6d3b\u3067\u304d\u308b\u3088\u308a\u3088\u3044\u672a\u6765\u3078\u306e\u201c\u4e00\u6b69\u201d\u3092\u3068\u3082\u306b\u8e0f\u307f\u51fa\u305d\u3046\u300d\u300f\u3068\u306e\u8a18\u8ff0\u304c\u3042\u308b\u30022015\u5e74\u306eEURORDIS\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066”Living with a Rare Disease”\u3001\u540c\u30b9\u30ed\u30fc\u30ac\u30f3\u3068\u3057\u3066”Day-by-day, hand-in-hand”\u304c\u63b2\u3052\u3089\u308c\u3066\u3044\u308b[20][21]\u3002\u65e5\u672c\u8a9e\u306b\u3088\u308b\u30c6\u30fc\u30de\u3068\u3057\u3066\u300c\u3064\u3080\u3050 \u301c\u3042\u306a\u305f\u3068 \u3067\u3042\u3044 \u3064\u306a\u304c\u308b 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umu\u306b\u3001\u6771\u3061\u3065\u308b\u306e\u53c2\u52a0\u53ef\u80fd\u6027\u304c\u544a\u3052\u3089\u308c\u3066\u3044\u308b[52]\u3002\u30a2\u30e1\u30ea\u30ab\u5408\u8846\u56fd\u3067\u306f\u5973\u512a\u306een:Patricia Richardson\u304c\u5ba3\u4f1d\u6d3b\u52d5\u306b\u53c2\u52a0\u3057\u3066\u3044\u308b[53]\u3002\u5e0c\u5c11\u75be\u60a3\u306b\u3088\u308a\u7236\u89aa\u3092\u4ea1\u304f\u3057\u305f\u3068\u8ff0\u3079\u3089\u308c\u3066\u3044\u308b\u3002\u30d5\u30a3\u30ea\u30d4\u30f3\u3067\u306f\u3001\u5927\u7d71\u9818\u4ee4\u306b\u57fa\u3065\u304d\u30011\u65e5\u9650\u308a\u3067\u306f\u306a\u304f\u30011\u9031\u9593\u3001National Rare Disease Week\u304c\u958b\u50ac\u3055\u308c\u30012015\u5e74\u306f\u305d\u306e6\u5ea6\u76ee\u3067\u3042\u308b[54]\u3002\u30ad\u30e4\u30ce\u30f3\u3068\u3044\u3063\u305f\u65e5\u672c\u306e\u5927\u624b\u4f01\u696d\u306b\u3088\u308b\u5f8c\u63f4\u3082\u8a18\u3055\u308c\u3066\u3044\u308b\u3002\u4e3b\u305f\u308b\u30bd\u30fc\u30b7\u30e3\u30eb\u30e1\u30c7\u30a3\u30a2\u5c55\u958b\u3068\u3057\u3066\u306f\u3001EURORDIS\u306b\u3088\u308aFacebook\u3001Twitter\u3001YouTube\u3001flickr\u3001Google+\u3001en:Thunderclap\u304c\u3042\u3052\u3089\u308c\u3066\u3044\u308b[55]\u3002\u65e5\u672c\u56fd\u5185\u5411\u3051\u306e\u516c\u5f0f\u306e\u3082\u306e\u306f\u3001Facebook[56]\u3001Twitter[57]\u3001YouTube\u3001USTREAM[58]\u304c\u3042\u308b\u3002\u51fa\u5178\u30fb\u811a\u6ce8[\u7de8\u96c6]\u5916\u90e8\u30ea\u30f3\u30af[\u7de8\u96c6]     (adsbygoogle = window.adsbygoogle || 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