{"id":1277,"date":"2025-01-16T23:34:22","date_gmt":"2025-01-16T22:34:22","guid":{"rendered":"https:\/\/remeds.org\/?page_id=1277"},"modified":"2025-07-20T14:19:52","modified_gmt":"2025-07-20T12:19:52","slug":"terms-and-conditions","status":"publish","type":"page","link":"https:\/\/remeds.org\/ja\/terms-and-conditions\/","title":{"rendered":"\u3054\u5229\u7528\u898f\u7d04"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"1277\" class=\"elementor elementor-1277\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c9b74c0 e-flex e-con-boxed e-con e-parent\" data-id=\"c9b74c0\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4e91aed elementor-widget elementor-widget-heading\" data-id=\"4e91aed\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">\u3054\u5229\u7528\u898f\u7d04<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-69f4f3c elementor-widget elementor-widget-text-editor\" data-id=\"69f4f3c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p><strong>MECP2\u91cd\u8907\u75c7\u5019\u7fa4 \u60a3\u8005\u7c3f\u30fb\u8abf\u67fb\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\uff08REMEDS \u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\uff09<\/strong><\/p><p>MECP2\u91cd\u8907\u75c7\u5019\u7fa4\u60a3\u8005\u767b\u9332\u7c3f\u30fb\u8abf\u67fb\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\uff08\u901a\u79f0\u300cREMEDS\u300d\u3001\u307e\u305f\u306f\u300cREMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u300d\uff09\u3078\u3088\u3046\u3053\u305d\u3002<br \/><strong>\u4ee5\u4e0b\u306e\u60c5\u5831\u3092\u3088\u304f\u304a\u8aad\u307f\u304f\u3060\u3055\u3044\u3002 <\/strong><\/p><p><strong>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u3054\u5229\u7528\u306b\u3042\u305f\u308a\u3001\u3054\u5229\u7528\u8005\u304c18\u6b73\u4ee5\u4e0a\u3001\u5c45\u4f4f\u3059\u308b\u5e02\u3001\u770c\u3001\u3082\u3057\u304f\u306f\u56fd\u306b\u304a\u3044\u3066\u3001\u6210\u4eba\u5e74\u9f62\u306b\u9054\u3057\u3066\u3044\u308b\u3053\u3068\u3002\u672a\u6210\u5e74\u8005\u3001\u3082\u3057\u304f\u306f\u3054\u81ea\u8eab\u3067\u5224\u65ad\u3059\u308b\u3053\u3068\u304c\u56f0\u96e3\u306a\u6210\u4eba\u3092\u4ee3\u7406\u3059\u308b\u6cd5\u7684\u6a29\u9650\u3092\u6709\u3057\u3066\u3044\u308b\u3053\u3068\u3092\u8868\u660e\u3057\u3001\u4ee5\u4e0b\u306e\u5229\u7528\u898f\u7d04\u3092\u7406\u89e3\u3057\u627f\u8afe\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002 <\/strong><\/p><p>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u30a2\u30af\u30bb\u30b9\u307e\u305f\u306f\u53c2\u52a0\u306b\u3088\u308a\u3001\u5229\u7528\u8005\u306f\u4ee5\u4e0b\u306e\u898f\u7d04\uff08\u4ee5\u4e0b\u300c\u898f\u7d04\u300d\uff09\u3092\u9075\u5b88\u3057\u3001\u3053\u308c\u306b\u62d8\u675f\u3055\u308c\u308b\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002 <strong>\u672c\u898f\u7d04\u306b\u540c\u610f\u3055\u308c\u306a\u3044\u5834\u5408\u306f\u3001\u672c\u30b5\u30a4\u30c8\u3078\u306e\u30a2\u30af\u30bb\u30b9\u3001\u672c\u30b5\u30a4\u30c8\u4e0a\u307e\u305f\u306f\u672c\u30b5\u30a4\u30c8\u3092\u901a\u3058\u3066\u63d0\u4f9b\u3055\u308c\u308b\u30b5\u30fc\u30d3\u30b9\u3092\u3054\u5229\u7528\u3059\u308b\u3053\u3068\u306f\u3067\u304d\u307e\u305b\u3093\u3002<\/strong><\/p><h2>1.REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u76ee\u7684<\/h2><p class=\"translation-block\">REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306f\u3001\u30aa\u30fc\u30b9\u30c8\u30ea\u30a2\u6cd5\u306b\u57fa\u3065\u304f\u975e\u55b6\u5229\u56e3\u4f53\u300c<strong>Verein zur Unterst\u00fctzung von Kindern mit MeCP2 Duplikation Syndrom, kurz\uff1aLasst uns MDS heilen<\/strong>(\u901a\u79f0\uff1aDupMECP2 - Lasst uns MDS heilen\uff09\u3067\u3059\u3002\u30aa\u30fc\u30b9\u30c8\u30ea\u30a2\u306e\u30ea\u30f3\u30c4\u306b\u3042\u308bKepler\u5927\u5b66\u75c5\u9662(Kepler Universit\u00e4tsklinikum)\u306e\u5354\u529b\u3092\u53d7\u3051\u3066\u3044\u307e\u3059\u3002REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u76ee\u7684\u306f\u3001MECP2\u91cd\u8907\u75c7\u5019\u7fa4\uff08\u300cMDS\u300d\uff09\u60a3\u8005\u306e\u81e8\u5e8a\u30c7\u30fc\u30bf\u304a\u3088\u3073\u533b\u7642\u30c7\u30fc\u30bf\u3092\u53ce\u96c6\u3001\u4fdd\u5b58\u3001\u5206\u6790\u3057\u3001\u79d1\u5b66\u7684\u7814\u7a76\u3092\u652f\u63f4\u3057\u3001\u81e8\u5e8a\u7684\u7406\u89e3\u3092\u6df1\u3081\u3001\u6cbb\u7642\u6cd5\u3092\u6539\u5584\u3059\u308b\u3053\u3068\u3067\u3059\u3002\u60a3\u8005\u767b\u9332\u306b\u3088\u308a\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u30c7\u30fc\u30bf\u63d0\u51fa\u304c\u53ef\u80fd\u306b\u306a\u308a\u307e\u3059\u304c\u3001\u7279\u5b9a\u306e\u7814\u7a76\u3078\u306e\u53c2\u52a0\u306b\u306f\u3001\u5225\u9014\u6587\u66f8\u306b\u3088\u308b\u53c2\u52a0\u8005\u306e\u660e\u793a\u7684\u306a\u8aac\u660e\u306b\u57fa\u3065\u304f\u540c\u610f\u304c\u5fc5\u8981\u3068\u306a\u308a\u307e\u3059\u3002<\/p><p class=\"translation-block\">\u30c7\u30fc\u30bf\u306e\u53d6\u308a\u6271\u3044\u304a\u3044\u3066\u3001\u6700\u9ad8\u6c34\u6e96\u306e\u30bb\u30ad\u30e5\u30ea\u30c6\u30a3\u3068\u30d7\u30e9\u30a4\u30d0\u30b7\u30fc\u3092\u9075\u5b88\u3057\u307e\u3059\u3002\u767b\u9332\u8005\u306e\u660e\u793a\u7684\u306a\u540c\u610f\u306a\u3057\u306b\u3001\u500b\u4eba\u3092\u7279\u5b9a\u3067\u304d\u308b\u30c7\u30fc\u30bf\u304c\u7b2c\u4e09\u8005\u3068\u5171\u6709\u3055\u308c\u308b\u3053\u3068\u306f\u3042\u308a\u307e\u305b\u3093\u3002\u305f\u3060\u3057\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306f\u3001\u7814\u7a76\u8005\u3001\u88fd\u85ac\u4f1a\u793e\u3001\u898f\u5236\u6a5f\u95a2\u3001\u305d\u306e\u4ed6\u627f\u8a8d\u3055\u308c\u305f\u7b2c\u4e09\u8005\uff08\u4e3b\u306bMDS\u60a3\u8005\u3068\u305d\u306e\u3054\u5bb6\u65cf\uff09\u304c\u3001\u4eee\u540d\u5316\u307e\u305f\u306f\u533f\u540d\u5316\u3055\u308c\u305f\u60c5\u5831\u3092\u691c\u7d22\u30fb\u95b2\u89a7\u3059\u308b\u3053\u3068\u3092\u8a31\u53ef\u3059\u308b\u5834\u5408\u304c\u3042\u308a\u307e\u3059\u3002\u8a73\u3057\u304f\u306f\u3001MDS\u60a3\u8005\u306e\u89aa\u5fa1\u69d8\u304a\u3088\u3073\u6cd5\u5b9a\u5f8c\u898b\u4eba\u306e\u305f\u3081\u306e\u60c5\u5831\u3092\u3054\u89a7\u304f\u3060\u3055\u3044\u3002<\/p><h2>2.\u898f\u7d04\u306e\u53d7\u8afe<\/h2><p>REMEDS\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\uff08\u4ee5\u4e0b\u3001\u300c\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u300d\uff09\u304a\u3088\u3073REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u5229\u7528\u306f\u3001\u4ee5\u4e0b\u306e\u898f\u7d04\u306b\u6e96\u62e0\u3057\u307e\u3059\u3002 \u00a0<\/p><p>\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u5229\u7528\u3059\u308b\u3053\u3068\u306b\u3088\u308a\u3001\u3054\u5229\u7528\u8005\u306f\u672c\u898f\u7d04\u3092\u8aad\u307f\u3001\u672c\u898f\u7d04\u306b\u540c\u610f\u3057\u305f\u3053\u3068\u3092\u8a8d\u3081\u3001\u627f\u8afe\u3057\u305f\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u672c\u898f\u7d04\u306b\u540c\u610f\u3057\u306a\u3044\u5834\u5408\u3001\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30c7\u30fc\u30bf\u9001\u4fe1\u3001\u307e\u305f\u306f\u305d\u306e\u4ed6\u306e\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306e\u5229\u7528\u306f\u3067\u304d\u307e\u305b\u3093\u3002<\/p><h2>3. <strong>\u77e5\u7684\u8ca1\u7523\u6a29\u3068\u6240\u6709\u6a29<\/strong><\/h2><p class=\"translation-block\">\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u304cREMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3092\u8a2d\u7acb\u3057\u3001\u305d\u306e\u4f5c\u6210\u3001\u904b\u55b6\u3001\u7dad\u6301\u3001\u30c7\u30fc\u30bf\u4fdd\u7ba1\u3001\u304a\u3088\u3073\u5168\u4f53\u7684\u306a\u76ee\u7684\u306b\u8cac\u4efb\u3092\u8ca0\u3044\u307e\u3059\u3002\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u5185\u306e\u3059\u3079\u3066\u306e\u30da\u30fc\u30b8\u306f\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u304c\u6240\u6709\u3057\u307e\u3059\u3002\u4fdd\u8b77\u53ef\u80fd\u306a\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306e\u3059\u3079\u3066\u306e\u90e8\u5206\u304a\u3088\u3073REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306b\u63d0\u51fa\u3055\u308c\u305f\u3059\u3079\u3066\u306e\u30c7\u30fc\u30bf\u306b\u3064\u3044\u3066\u3001\u540c\u56e3\u4f53\u304c\u72ec\u5360\u7684\u6240\u6709\u6a29\u3092\u6709\u3057\u307e\u3059\u3002\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306f\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306b\u304a\u3051\u308b\u3059\u3079\u3066\u306e\u77e5\u7684\u8ca1\u7523\u6a29\u304a\u3088\u3073\u30ce\u30a6\u30cf\u30a6\u3092\u4fdd\u6709\u3057\u307e\u3059\u3002\u3053\u308c\u306b\u306f\u3001\u6a19\u6e96\u30d7\u30ed\u30b0\u30e9\u30e0\u30c6\u30f3\u30d7\u30ec\u30fc\u30c8\u3092\u542b\u3080\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3092\u8907\u88fd\u3001\u518d\u4f5c\u6210\u3001\u307e\u305f\u306f\u518d\u7de8\u96c6\u3059\u308b\u3053\u3068\u3092\u53ef\u80fd\u306b\u3059\u308b\u3059\u3079\u3066\u306e\u8457\u4f5c\u6a29\u304c\u542b\u307e\u308c\u307e\u3059\u304c\u3001\u3053\u308c\u306b\u9650\u5b9a\u3055\u308c\u308b\u3082\u306e\u3067\u306f\u3042\u308a\u307e\u305b\u3093\u3002\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306f\u3001\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u304a\u3088\u3073 REMEDS \u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u3044\u304b\u306a\u308b\u90e8\u5206\u306b\u3064\u3044\u3066\u3082\u3001\u7de8\u96c6\u304a\u3088\u3073\u524a\u9664\u3059\u308b\u6a29\u5229\u3092\u6709\u3057\u307e\u3059\u3002<\/p><p class=\"translation-block\">\u3042\u306a\u305f\u306f\u3001\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS \u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306b\u542b\u307e\u308c\u308b\u30b3\u30f3\u30c6\u30f3\u30c4\u304a\u3088\u3073\u3001\u305d\u308c\u3092\u5236\u4f5c\u3059\u308b\u305f\u3081\u306e\u77e5\u7684\u8ca1\u7523\u306b\u3064\u3044\u3066\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306e\u4e8b\u524d\u306e\u66f8\u9762\u306b\u3088\u308b\u540c\u610f\u3068\u627f\u8a8d\u306a\u3057\u306b\u3001\u305d\u306e\u5168\u90e8\u307e\u305f\u306f\u4e00\u90e8\u3092\u3001\u3044\u304b\u306a\u308b\u5f62\u614b\u307e\u305f\u306f\u624b\u6bb5\u306b\u3088\u3063\u3066\u3082\u3001\u5909\u66f4\u3001\u8907\u88fd\u3001\u914d\u5e03\u3001\u30d5\u30ec\u30fc\u30e0\u8868\u793a\u3001\u518d\u63b2\u8f09\u3001\u30c0\u30a6\u30f3\u30ed\u30fc\u30c9\u3001\u8868\u793a\u3001\u307e\u305f\u306f\u8ca9\u58f2\u3057\u3066\u306f\u306a\u3089\u306a\u3044\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002<\/p><h2 class=\"translation-block\">4.\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306e\u3054\u5229\u7528<\/h2><p><strong>a.\u6cd5\u7684\u80fd\u529b<\/strong><\/p><p>\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306f\u3001\u60a3\u8005\u306e\u89aa\u5fa1\u69d8\u3001\u4ecb\u8b77\u8005\u3001\u307e\u305f\u306f\u6cd5\u5b9a\u5f8c\u898b\u4eba\u3067\u3042\u308a\u300118\u6b73\u4ee5\u4e0a\uff08\u307e\u305f\u306f\u5c45\u4f4f\u3059\u308b\u5e02\u30fb\u770c\u30fb\u56fd\u306b\u304a\u3051\u308b\u6210\u4eba\u5e74\u9f62\u4ee5\u4e0a\uff09\u3067\u3001\u6cd5\u7684\u306b\u62d8\u675f\u529b\u306e\u3042\u308b\u5951\u7d04\u3092\u7de0\u7d50\u3059\u308b\u5b8c\u5168\u306a\u80fd\u529b\u3068\u5224\u65ad\u529b\u3092\u6709\u3057\u3001\u3054\u81ea\u8eab\u304a\u3088\u3073MDS\u60a3\u8005\u672c\u4eba\u306e\u500b\u4eba\u60c5\u5831\u3084\u5065\u5eb7\u60c5\u5831\u306e\u5171\u6709\u306b\u540c\u610f\u3067\u304d\u308b\u5834\u5408\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u767b\u9332\u3092\u3054\u5229\u7528\u3044\u305f\u3060\u3051\u307e\u3059\u3002<\/p><p><strong>b.\u4efb\u610f\u53c2\u52a0<\/strong><\/p><p>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u53c2\u52a0\u306f\u3001\u5b8c\u5168\u306b\u4efb\u610f\u3067\u3059\u3002\u3042\u306a\u305f\u306f\u3044\u3064\u3067\u3082\u3001\u53c2\u52a0\u3092\u53d6\u308a\u6d88\u3059\u6a29\u5229\u304c\u3042\u308a\u307e\u3059\u3002\u8a73\u3057\u304f\u306f\u3001MDS\u60a3\u8005\u306e\u89aa\u5fa1\u69d8\u304a\u3088\u3073\u6cd5\u5b9a\u5f8c\u898b\u4eba\u306e\u305f\u3081\u306e\u60c5\u5831\u3092\u3054\u89a7\u304f\u3060\u3055\u3044\u3002<\/p><p><strong>c.\u5408\u6cd5\u7684\u306a\u3054\u5229\u7528<\/strong><\/p><p>\u3042\u306a\u305f\u306f\u3001\u6b21\u306b\u5b9a\u7fa9\u3059\u308b\u7981\u6b62\u884c\u70ba\u3092\u884c\u308f\u306a\u3044\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u7981\u6b62\u884c\u70ba\u3068\u306f\u3001\u6b21\u306e\u3044\u305a\u308c\u304b\u306b\u8a72\u5f53\u3059\u308b\u884c\u70ba\u3092\u6307\u3057\u307e\u3059\u3002(i) \u300cDupMECP2-Lasst uns MDS heilen\u300d\u3001\u307e\u305f\u306f\u4ed6\u306e\u5f53\u4e8b\u8005\u3084\u6240\u6709\u7269\u3092\u8650\u5f85\u3001\u5acc\u304c\u3089\u305b\u3001\u307e\u305f\u306f\u305d\u306e\u4ed6\u306e\u65b9\u6cd5\u3067\u5bb3\u3059\u308b\u884c\u70ba\u3001(ii) \u4ed6\u306e\u5f53\u4e8b\u8005\u306e\u30d7\u30e9\u30a4\u30d0\u30b7\u30fc\u306e\u6a29\u5229\u3092\u4fb5\u5bb3\u3059\u308b\u3001\u307e\u305f\u306f\u4fb5\u5bb3\u3057\u3088\u3046\u3068\u3059\u308b\u884c\u70ba\u3001(iii) REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306e\u4f7f\u7528\u307e\u305f\u306f\u904b\u55b6\u3092\u59a8\u5bb3\u3057\u3088\u3046\u3068\u3059\u308b\u884c\u70ba\u3002\u307e\u305f\u3001\u3042\u306a\u305f\u306f\u6b21\u306e\u4e8b\u9805\u306b\u3082\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\ni) 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REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3001\u307e\u305f\u306f\u305d\u308c\u306b\u63a5\u7d9a\u3055\u308c\u3066\u3044\u308b\u30b5\u30fc\u30d0\u30fc\u30fb\u30b5\u30fc\u30d3\u30b9\u3001\u4ed6\u306e\u30a2\u30ab\u30a6\u30f3\u30c8\u3001\u30b3\u30f3\u30d4\u30e5\u30fc\u30bf\u30fc\u30b7\u30b9\u30c6\u30e0\u30fb\u30cd\u30c3\u30c8\u30ef\u30fc\u30af\u3078\u306e\u4e0d\u6b63\u30a2\u30af\u30bb\u30b9\u3092\u8a66\u307f\u308b\u3053\u3068\u3001(ii) \u30cf\u30c3\u30ad\u30f3\u30b0\u3001\u30d1\u30b9\u30ef\u30fc\u30c9\u30de\u30a4\u30cb\u30f3\u30b0\u3001\u307e\u305f\u306f\u305d\u306e\u4ed6\u306e\u624b\u6bb5\u3067REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306b\u30a2\u30af\u30bb\u30b9\u3059\u308b\u3053\u3068\u3001(iii) REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306b\u4fdd\u5b58\u3055\u308c\u3066\u3044\u308b\u6a5f\u5bc6\u60c5\u5831\u3001\u5c02\u6709\u60c5\u5831\u3001\u304a\u3088\u3073\u3001\u307e\u305f\u306f\u500b\u4eba\u60c5\u5831\u3092\u53d6\u5f97\u3057\u305f\u308a\u3001\u53d6\u5f97\u3092\u8a66\u307f\u308b\u3053\u3068\uff1b(v) REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3001\u307e\u305f\u306f\u305d\u3053\u3067\u30a2\u30af\u30bb\u30b9\u53ef\u80fd\u306a\u60c5\u5831\u3092\u4e0d\u6b63\u306b\u4f7f\u7528\u3059\u308b\u3053\u3068\u3002<\/p><p><strong>e.\u6d77\u5916\u5229\u7528\u8005<\/strong><\/p><p>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306f\u3001EU\u4e00\u822c\u30c7\u30fc\u30bf\u4fdd\u8b77\u898f\u5247\uff08GDPR\uff09\u3092\u542b\u3080\u6b27\u5dde\u9023\u5408\u306e\u30c7\u30fc\u30bf\u4fdd\u8b77\u6cd5\u306b\u6e96\u62e0\u3057\u3066\u3044\u307e\u3059\u3002<\/p><p>\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30a2\u30af\u30bb\u30b9\u306f\u3042\u306a\u305f\u3054\u81ea\u8eab\u306e\u8cac\u4efb\u306b\u304a\u3044\u3066\u884c\u308f\u308c\u308b\u3082\u306e\u3067\u3042\u308a\u3001\u73fe\u5730\u306e\u6cd5\u4ee4\u3084\u898f\u5236\u306e\u9075\u5b88\u306b\u3064\u3044\u3066\u306f\u3001\u3042\u306a\u305f\u304c\u5358\u72ec\u3067\u8cac\u4efb\u3092\u8ca0\u3046\u3082\u306e\u3068\u3057\u307e\u3059\u3002<\/p><h2><strong>5. 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class=\"translation-block\">\u3054\u5229\u7528\u8005\u306f\u3001\u30d1\u30b9\u30ef\u30fc\u30c9\u304a\u3088\u3073\u30a2\u30ab\u30a6\u30f3\u30c8\u306e\u30bb\u30ad\u30e5\u30ea\u30c6\u30a3\u306b\u5358\u72ec\u3067\u8cac\u4efb\u3092\u8ca0\u3044\u3001\u3054\u5229\u7528\u8005\u306e\u30d1\u30b9\u30ef\u30fc\u30c9\u307e\u305f\u306f\u30a2\u30ab\u30a6\u30f3\u30c8\u306e\u4e0b\u3067\u884c\u308f\u308c\u308b\u3059\u3079\u3066\u306e\u884c\u70ba\u306b\u3064\u3044\u3066\u3001\u8a8d\u8b58\u306e\u6709\u7121\u306b\u304b\u304b\u308f\u3089\u305a\u3001\u5168\u8cac\u4efb\u3092\u8ca0\u3046\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u3054\u5229\u7528\u8005\u306f\u3001\u30d1\u30b9\u30ef\u30fc\u30c9\u304a\u3088\u3073\u30a2\u30ab\u30a6\u30f3\u30c8\u306e\u30bb\u30ad\u30e5\u30ea\u30c6\u30a3\u306b\u5358\u72ec\u3067\u8cac\u4efb\u3092\u8ca0\u3044\u3001\u3054\u5229\u7528\u8005\u306e\u30d1\u30b9\u30ef\u30fc\u30c9\u307e\u305f\u306f\u30a2\u30ab\u30a6\u30f3\u30c8\u306e\u4e0b\u3067\u884c\u308f\u308c\u308b\u3059\u3079\u3066\u306e\u884c\u70ba\u306b\u3064\u3044\u3066\u3001\u8a8d\u8b58\u306e\u6709\u7121\u306b\u304b\u304b\u308f\u3089\u305a\u3001\u5168\u8cac\u4efb\u3092\u8ca0\u3046\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u3054\u5229\u7528\u8005\u306f\u3001\u30d1\u30b9\u30ef\u30fc\u30c9\u3084\u30a2\u30ab\u30a6\u30f3\u30c8\u304c\u4e0d\u6b63\u306b\u4f7f\u7528\u3055\u308c\u305f\u53ef\u80fd\u6027\u304c\u3042\u308b\u5834\u5408\u3001\u307e\u305f\u306f\u305d\u306e\u4ed6\u306e\u30bb\u30ad\u30e5\u30ea\u30c6\u30a3\u9055\u53cd\u304c\u3042\u3063\u305f\u5834\u5408\u3001\u76f4\u3061\u306b\u30d1\u30b9\u30ef\u30fc\u30c9\u3092\u5909\u66f4\u3057\u3001REMEDS\u30b3\u30fc\u30c7\u30a3\u30cd\u30fc\u30bf\u30fc\uff08office@remeds.org\uff09\u306b\u96fb\u5b50\u30e1\u30fc\u30eb\u3067\u901a\u77e5\u3059\u308b\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u300c<strong>DupMECP2-Lasst uns MDS heilen <\/strong>\u300d\u306f\u3001\u304a\u5ba2\u69d8\u304c\u672c\u898f\u7d04\u3092\u9075\u5b88\u3057\u306a\u304b\u3063\u305f\u3053\u3068\u306b\u3088\u308a\u751f\u3058\u305f\u640d\u5931\u3084\u640d\u5bb3\u306b\u3064\u3044\u3066\u3001\u4e00\u5207\u306e\u8cac\u4efb\u3092\u8ca0\u3044\u307e\u305b\u3093\u3002\u300c<strong>DupMECP2-Lasst uns MDS heilen <\/strong>\u300d\u306f\u3001\u3042\u306a\u305f\u304c\u672c\u898f\u7d04\u306b\u9055\u53cd\u3057\u3066\u3044\u308b\u3001\u307e\u305f\u306f\u672c\u898f\u7d04\u306b\u53cd\u3059\u308b\u65b9\u6cd5\u3067 REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u307e\u305f\u306f\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u5229\u7528\u307e\u305f\u306f\u30a2\u30af\u30bb\u30b9\u3057\u3066\u3044\u308b\u3068\u5408\u7406\u7684\u306b\u5224\u65ad\u3057\u305f\u5834\u5408\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30a2\u30af\u30bb\u30b9\u306e\u5168\u3066\u3001\u307e\u305f\u306f\u4e00\u90e8\u3092\u62d2\u5426\u3001\u3082\u3057\u304f\u306f\u53d6\u308a\u6d88\u3059\u6a29\u5229\u3092\u7559\u4fdd\u3057\u307e\u3059\u3002<\/p><p><strong>b.\u30e6\u30fc\u30b6\u30fc\u6295\u7a3f\u30b3\u30f3\u30c6\u30f3\u30c4<\/strong><\/p><p>\u300c<strong>DupMECP2-Lasst uns MDS heilen <\/strong>\u300d\u306f\u3001\u3042\u306a\u305f\u304c\u672c\u898f\u7d04\u306b\u9055\u53cd\u3057\u3066\u3044\u308b\u3001\u307e\u305f\u306f\u672c\u898f\u7d04\u306b\u53cd\u3059\u308b\u65b9\u6cd5\u3067 REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u307e\u305f\u306f\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u5229\u7528\u307e\u305f\u306f\u30a2\u30af\u30bb\u30b9\u3057\u3066\u3044\u308b\u3068\u5408\u7406\u7684\u306b\u5224\u65ad\u3057\u305f\u5834\u5408\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30a2\u30af\u30bb\u30b9\u306e\u5168\u3066\u3001\u307e\u305f\u306f\u4e00\u90e8\u3092\u62d2\u5426\u3001\u3082\u3057\u304f\u306f\u53d6\u308a\u6d88\u3059\u6a29\u5229\u3092\u7559\u4fdd\u3057\u307e\u3059\u3002\u672c\u898f\u7d04\u306b\u9055\u53cd\u3059\u308b\u3001\u307e\u305f\u306f\u4e0d\u9069\u5207\u3001\u8a31\u5bb9\u3067\u304d\u306a\u3044\u5185\u5bb9\u304c\u542b\u307e\u308c\u308b\u5834\u5408\u3001\u3054\u5229\u7528\u8005\u306e REMEDS \u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30a2\u30af\u30bb\u30b9\u3092\u7d42\u4e86\u3055\u305b\u308b\u3053\u3068\u304c\u3042\u308a\u307e\u3059\u3002<\/p><p>\u3054\u5229\u7528\u8005\u306f\u3001\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306b\u6295\u7a3f\u3001\u516c\u958b\u3001\u8868\u793a\u3001\u30a2\u30c3\u30d7\u30ed\u30fc\u30c9\u3001\u307e\u305f\u306f\u305d\u306e\u4ed6\u306e\u65b9\u6cd5\u3067\u9001\u4fe1\u3059\u308b\u3059\u3079\u3066\u306e\u30b3\u30f3\u30c6\u30f3\u30c4\u306b\u3064\u3044\u3066\u8cac\u4efb\u3092\u8ca0\u3046\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u3054\u5229\u7528\u8005\u306f\u3001\u4ed6\u4eba\u306e\u500b\u4eba\u60c5\u5831\u3001\u307e\u305f\u306f\u8457\u4f5c\u6a29\u3001\u5546\u6a19\u6a29\u3001\u30d1\u30d6\u30ea\u30b7\u30c6\u30a3\u6a29\u3001\u30d7\u30e9\u30a4\u30d0\u30b7\u30fc\u6a29\u3001\u305d\u306e\u4ed6\u306e\u6240\u6709\u6a29\u306b\u3088\u308a\u4fdd\u8b77\u3055\u308c\u305f\u7d20\u6750\u3092\u3001\u5f53\u8a72\u500b\u4eba\u307e\u305f\u306f\u5f53\u8a72\u6a29\u5229\u306e\u6240\u6709\u8005\u306e\u660e\u793a\u7684\u306a\u8a31\u53ef\u306a\u304f\u3001\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u4e0a\u3067\u63d0\u4f9b\u307e\u305f\u306f\u5229\u7528\u53ef\u80fd\u306b\u3057\u306a\u3044\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u60c5\u5831\u306e\u9001\u4fe1\u304c\u8a31\u5bb9\u3055\u308c\u308b\u3053\u3068\u3001\u307e\u305f\u306f\u7d20\u6750\u304c\u305d\u306e\u3088\u3046\u306a\u6a29\u5229\u306b\u3088\u3063\u3066\u4fdd\u8b77\u3055\u308c\u3066\u3044\u306a\u3044\u3053\u3068\u3092\u5224\u65ad\u3059\u308b\u8cac\u4efb\u306f\u3001\u3054\u5229\u7528\u8005\u3067\u3042\u308b\u3042\u306a\u305f\u306b\u3042\u308a\u307e\u3059\u3002<\/p><p class=\"translation-block\">\u3055\u3089\u306b\u3001\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306b\u304a\u3051\u308b\u4e0d\u6b63\u884c\u70ba\u3084\u60aa\u7528\u3092\u3001REMEDS\u30b3\u30fc\u30c7\u30a3\u30cd\u30fc\u30bf\u30fc\u5b9b\u306b\u96fb\u5b50\u30e1\u30fc\u30eb\uff08<a href=\"mailto:office@remeds.org\" target=\"_self\">office@remeds.org<\/a>\uff09\u3067\u5831\u544a\u3059\u308b\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002 \u305d\u306e\u969b\u3001\u4e0d\u6b63\u884c\u70ba\u3084\u554f\u984c\u306e\u3042\u308b\u30b3\u30f3\u30c6\u30f3\u30c4\u306b\u3064\u3044\u3066\u5341\u5206\u306a\u8a73\u7d30\u3092\u63d0\u4f9b\u3057\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>n\u300d\u304c\u5358\u72ec\u306e\u88c1\u91cf\u3067\u5bfe\u5fdc\u306e\u6709\u7121\u3092\u5224\u65ad\u3067\u304d\u308b\u3088\u3046\u306b\u3057\u3066\u304f\u3060\u3055\u3044\u3002<\/p><p><strong>c.\u5354\u529b<\/strong><\/p><p class=\"translation-block\">\u3054\u5229\u7528\u8005\u306f\u3001\u672c\u898f\u7d04\u306b\u9055\u53cd\u3057\u3066\u3044\u308b\u3068\u7591\u308f\u308c\u308b\u3001\u307e\u305f\u306f\u5b9f\u969b\u306b\u9055\u53cd\u3057\u3066\u3044\u308b\u53ef\u80fd\u6027\u306e\u3042\u308b\u884c\u70ba\u306e\u8abf\u67fb\u306b\u5bfe\u3057\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306b\u5168\u9762\u7684\u306b\u5354\u529b\u3059\u308b\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002<\/p><p><strong>d.\u8abf\u67fb\u7814\u7a76<\/strong><\/p><p>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3067\u5b9f\u65bd\u3055\u308c\u308b\u7814\u7a76\u306b\u306f\u3001MDS\u306e\u7406\u89e3\u3092\u6df1\u3081\u308b\u3053\u3068\u3092\u76ee\u7684\u3068\u3057\u305f\u89b3\u5bdf\u7814\u7a76\u3001\u907a\u4f1d\u5b50\u7814\u7a76\u3001\u81e8\u5e8a\u7814\u7a76\u306a\u3069\u304c\u542b\u307e\u308c\u307e\u3059\u3002\u3054\u5229\u7528\u8005\u306f\u3001\u7279\u5b9a\u306e\u7814\u7a76\u3078\u306e\u53c2\u52a0\u3092\u9078\u629e\u3059\u308b\u524d\u306b\u3001\u5fc5\u305a\u8a73\u7d30\u306a\u60c5\u5831\u3068\u500b\u5225\u306e\u4e8b\u524d\u306e\u8aac\u660e\u3068\u540c\u610f\u306e\u66f8\u985e\u3092\u53d7\u3051\u53d6\u308a\u307e\u3059\u3002<\/p><p><strong>e.\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u5229\u7528\u3059\u308b\u30ea\u30b9\u30af<\/strong><\/p><p class=\"translation-block\">\u3054\u5229\u7528\u8005\u306f\u3001\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u30a2\u30c3\u30d7\u30ed\u30fc\u30c9\u3084\u3001\u305d\u3053\u304b\u3089\u3001\u307e\u305f\u306f\u305d\u3053\u3092\u7d4c\u7531\u3057\u3066\u884c\u3046\u9001\u4fe1\u304c\u3001\u4e0d\u6b63\u306a\u7b2c\u4e09\u8005\u306b\u3088\u3063\u3066\u508d\u53d7\u3055\u308c\u3001\u5229\u7528\u3055\u308c\u308b\u53ef\u80fd\u6027\u304c\u3042\u308b\u3053\u3068\u3092\u8a8d\u8b58\u3057\u3001\u3053\u308c\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\n\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306f\u3001\u305d\u306e\u3088\u3046\u306a\u7b2c\u4e09\u8005\u306b\u3088\u308b\u4e0d\u6b63\u4f7f\u7528\u3092\u9632\u3050\u305f\u3081\u306b\u3001\u3042\u3089\u3086\u308b\u5408\u7406\u7684\u306a\u52aa\u529b\u3092\u884c\u3044\u307e\u3059\u3002<\/p><p><strong>f.\u4ed6\u306e\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30ea\u30f3\u30af<\/strong><\/p><p class=\"translation-block\">\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306b\u306f\u3001\u95a2\u9023\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3078\u306e\u30ea\u30f3\u30af\u304c\u542b\u307e\u308c\u3066\u3044\u308b\u5834\u5408\u304c\u3042\u308a\u307e\u3059\u3002\u3044\u304b\u306a\u308b\u30ea\u30f3\u30af\u306e\u63b2\u8f09\u3082\u3001\u975e\u55b6\u5229\u56e3\u4f53\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306b\u3088\u308b\u63a8\u5968\u3092\u610f\u5473\u3059\u308b\u3082\u306e\u3067\u306f\u3042\u308a\u307e\u305b\u3093\u3002\u3054\u81ea\u8eab\u306e\u4f7f\u7528\u76ee\u7684\u306b\u9078\u629e\u3057\u305f\u3082\u306e\u304c\u3001\u30a6\u30a4\u30eb\u30b9\u3001\u30ef\u30fc\u30e0\u3001\u30c8\u30ed\u30a4\u306e\u6728\u99ac\u3001\u305d\u306e\u4ed6\u306e\u7834\u58ca\u7684\u306a\u6027\u8cea\u3092\u6301\u3064\u3082\u306e\u3084\u3001\u7b2c\u4e09\u8005\u306e\u6a29\u5229\u3092\u4fb5\u5bb3\u3059\u308b\u3082\u306e\u3092\u542b\u307e\u306a\u3044\u3053\u3068\u3092\u78ba\u5b9f\u306b\u3059\u308b\u305f\u3081\u306e\u4e88\u9632\u63aa\u7f6e\u3092\u8b1b\u3058\u308b\u306e\u306f\u3001\u3054\u5229\u7528\u8005\u81ea\u8eab\u306e\u8cac\u4efb\u3067\u3059\u3002<\/p><h2><strong>6. <\/strong><strong>\u53c2\u52a0\u306b\u3088\u308b\u5229\u76ca\u306e\u514d\u8cac\u4e8b\u9805<\/strong><\/h2><p>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\/\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u4e0a\u3067\u884c\u308f\u308c\u308b\u30a2\u30f3\u30b1\u30fc\u30c8\u3001\u8abf\u67fb\u3001\u30d5\u30a9\u30fc\u30e0\u3001\u307e\u305f\u306f\u3044\u304b\u306a\u308b\u7a2e\u985e\u306e\u7814\u7a76\u306b\u56de\u7b54\u3057\u305f\u3068\u3057\u3066\u3082\u3001\u7814\u7a76\u3078\u306e\u53c2\u52a0\u3084\u3001\u76f4\u63a5\u7684\u306a\u533b\u7642\u30b1\u30a2\u3078\u306e\u30a2\u30af\u30bb\u30b9\u3092\u4fdd\u8a3c\u3059\u308b\u3082\u306e\u3067\u306f\u3042\u308a\u307e\u305b\u3093\u3002<\/p><h2><strong>7. <\/strong><strong>\u533b\u7642\u30a2\u30c9\u30d0\u30a4\u30b9\u306b\u95a2\u3059\u308b\u514d\u8cac\u4e8b\u9805<\/strong><\/h2><p>\u5f53\u30b5\u30a4\u30c8\u306e\u3059\u3079\u3066\u306e\u30b3\u30f3\u30c6\u30f3\u30c4\u306f\u60c5\u5831\u63d0\u4f9b\u306e\u307f\u3092\u76ee\u7684\u3068\u3057\u3066\u304a\u308a\u3001\u5c02\u9580\u7684\u306a\u533b\u7642\u5224\u65ad\u3001\u52a9\u8a00\u3001\u8a3a\u65ad\u3001\u307e\u305f\u306f\u6cbb\u7642\u306b\u4ee3\u308f\u308b\u3053\u3068\u3092\u610f\u56f3\u3057\u305f\u3082\u306e\u3067\u306f\u3042\u308a\u307e\u305b\u3093\u3002\u3054\u81ea\u8eab\u307e\u305f\u306f\u304a\u5b50\u69d8\u306e\u5065\u5eb7\u306b\u95a2\u3059\u308b\u8cea\u554f\u306f\u3001\u533b\u5e2b\u307e\u305f\u306f\u6709\u8cc7\u683c\u306e\u533b\u7642\u63d0\u4f9b\u8005\u306b\u3054\u76f8\u8ac7\u304f\u3060\u3055\u3044\u3002\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u306b\u63b2\u8f09\u3055\u308c\u3066\u3044\u308b\u3001\u3042\u308b\u3044\u306f\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u901a\u3058\u3066\u63d0\u4f9b\u3055\u308c\u305f\u60c5\u5831\u3092\u7406\u7531\u306b\u3001\u6cbb\u7642\u3084\u6a19\u6e96\u7684\u306a\u533b\u7642\u30b1\u30a2\u306b\u95a2\u3059\u308b\u533b\u7642\u7684\u52a9\u8a00\u3092\u7121\u8996\u3057\u305f\u308a\u3001\u53d7\u8a3a\u3092\u9045\u3089\u305b\u305f\u308a\u3057\u3066\u306f\u306a\u308a\u307e\u305b\u3093\u3002<\/p><h2><strong>8. <\/strong><strong>\u4fdd\u8a3c\u306e\u514d\u8cac\u6761\u9805<\/strong><\/h2><p>\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u304c\u4e2d\u65ad\u306a\u304f\u3001\u307e\u305f\u306f\u30a8\u30e9\u30fc\u306a\u304f\u7a3c\u50cd\u3059\u308b\u3053\u3068\u3001\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u6b20\u9665\u304c\u4fee\u6b63\u3055\u308c\u308b\u3053\u3068\u3002\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306b\u542b\u307e\u308c\u308b\u307e\u305f\u306f\u9001\u4fe1\u3055\u308c\u308b\u60c5\u5831\u304c\u5b8c\u5168\u3067\u6b63\u78ba\u304b\u3064\u6700\u65b0\u3067\u3042\u308b\u3053\u3068\u3002\u3054\u5229\u7528\u8005\u3084\u305d\u306e\u4ed6\u306e\u60c5\u5831\u304c\u4e0d\u6b63\u30a2\u30af\u30bb\u30b9\u3084\u958b\u793a\u304b\u3089\u5b8c\u5168\u306b\u4fdd\u8b77\u3055\u308c\u308b\u3053\u3068\u3002\u3042\u308b\u3044\u306f\u60c5\u5831\u304c\u30a6\u30a4\u30eb\u30b9\u3084\u305d\u306e\u4ed6\u306e\u60aa\u610f\u3042\u308b\u30d7\u30ed\u30b0\u30e9\u30e0\u304b\u3089\u5b8c\u5168\u306b\u7121\u5bb3\u3067\u3042\u308b\u3053\u3068\u306b\u3064\u3044\u3066\u3001\u4e00\u5207\u306e\u4fdd\u8a3c\u306f\u3042\u308a\u307e\u305b\u3093\u3002<\/p><h2><strong>9. <\/strong><strong>\u514d\u8cac<\/strong><\/h2><p class=\"translation-block\">\u3054\u5229\u7528\u8005\u306f\u3001\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u306e\u4e0d\u9069\u5207\u307e\u305f\u306f\u9055\u6cd5\u306a\u4f7f\u7528\u306b\u5bfe\u3057\u3066\u3001\u300c<strong>DupMECP2-lasst uns MDS heilen<\/strong>\u300d\u3092\u514d\u8cac\u3057\u3001\u640d\u5bb3\u304b\u3089\u4fdd\u8b77\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002<\/p><h2>10. <strong>\u3054\u5229\u7528\u304a\u3088\u3073\u4fdd\u7ba1\u306b\u95a2\u3059\u308b\u4e00\u822c\u7684\u6163\u884c<\/strong><\/h2><p class=\"translation-block\">\u3054\u5229\u7528\u8005\u306f\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u304c\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u4e0a\u3067\u7ba1\u7406\u307e\u305f\u306f\u9001\u4fe1\u3055\u308c\u308b\u30e1\u30c3\u30bb\u30fc\u30b8\u3084\u3001\u305d\u306e\u4ed6\u306e\u901a\u4fe1\u3001\u30b3\u30f3\u30c6\u30f3\u30c4\u306e\u524a\u9664\u3084\u4fdd\u5b58\u306e\u5931\u6557\u306b\u3064\u3044\u3066\u3001\u4e00\u5207\u306e\u8cac\u4efb\u3092\u8ca0\u308f\u306a\u3044\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u304c\u3001\u9577\u671f\u9593\u306b\u308f\u305f\u308a\u3054\u5229\u7528\u306e\u306a\u3044\u30a2\u30ab\u30a6\u30f3\u30c8\u306e\u30ed\u30b0\u30aa\u30d5\u3092\u3059\u308b\u6a29\u5229\u3092\u6709\u3059\u308b\u3053\u3068\u3092\u3001\u3054\u5229\u7528\u8005\u306f\u4e86\u627f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002<\/p><h2><strong>11. <\/strong><strong>\u30d7\u30e9\u30a4\u30d0\u30b7\u30fc\u304a\u3088\u3073\u5229\u7528\u306b\u3064\u3044\u3066<\/strong><\/h2><p class=\"translation-block\">\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306f\u3001\u9069\u7528\u3055\u308c\u308b\u6cd5\u5f8b\u306b\u57fa\u3065\u304d\u958b\u793a\u304c\u5fc5\u8981\u3067\u3042\u308b\u3068\u8aa0\u5b9f\u306b\u5224\u65ad\u3057\u305f\u5834\u5408\u3001\u7279\u5b9a\u306e\u60c5\u5831\u3092\u958b\u793a\u3059\u308b\u3001\u307e\u305f\u306f\u958b\u793a\u3092\u6c42\u3081\u3089\u308c\u308b\u3053\u3068\u304c\u3042\u308a\u307e\u3059\u3002\u305d\u306e\u4ed6\u3059\u3079\u3066\u306e\u5834\u5408\u306b\u304a\u3044\u3066\u3001\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3092\u901a\u3058\u3066\u53ce\u96c6\u3055\u308c\u305f\u30c7\u30fc\u30bf\u304a\u3088\u3073\u60c5\u5831\u306f\u3001\u3054\u5229\u7528\u8005\u304a\u3088\u3073\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306b\u3088\u3063\u3066\u6a5f\u5bc6\u3068\u3057\u3066\u4fdd\u6301\u3055\u308c\u307e\u3059\u3002<\/p><h2><strong>12. <\/strong><strong>\u5951\u7d04\u306e\u7d42\u4e86<\/strong><\/h2><p>\u3054\u5229\u7528\u8005\u306f\u3001\u7406\u7531\u306e\u6709\u7121\u306b\u304b\u304b\u308f\u3089\u305a\u3001\u307e\u305f\u4e8b\u524d\u306e\u901a\u77e5\u306a\u3057\u306b\u3001\u5229\u7528\u8005\u306e\u30a2\u30ab\u30a6\u30f3\u30c8\u304a\u3088\u3073\u5f53\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u30a2\u30af\u30bb\u30b9\u304c\u76f4\u3061\u306b\u7d42\u4e86\u3059\u308b\u53ef\u80fd\u6027\u304c\u3042\u308b\u3053\u3068\u306b\u540c\u610f\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\u524d\u8ff0\u306e\u5185\u5bb9\u3092\u5236\u9650\u3059\u308b\u3053\u3068\u306a\u304f\u3001\u6b21\u306e\u5834\u5408\u306b\u306f\u3054\u5229\u7528\u8005\u306e\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\uff0fREMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u5229\u7528\u304c\u7d42\u4e86\u3057\u307e\u3059\u3002(a) \u672c\u898f\u7d04\u306e\u9055\u53cd\u307e\u305f\u306f\u9055\u53cd\u884c\u70ba\u3001(b) \u6cd5\u57f7\u884c\u6a5f\u95a2\u3084\u305d\u306e\u4ed6\u306e\u653f\u5e9c\u6a5f\u95a2\u304b\u3089\u306e\u8981\u8acb\u3001(c) \u3054\u81ea\u8eab\u306e\u8981\u8acb\uff08\u3054\u81ea\u8eab\u306b\u3088\u308b\u30a2\u30ab\u30a6\u30f3\u30c8\u524a\u9664\uff09\u3001(d) \u60f3\u5b9a\u5916\u306e\u6280\u8853\u7684\u554f\u984c\u3001(e) \u9577\u671f\u9593\u3054\u5229\u7528\u304c\u306a\u3044\u5834\u5408\u3002<\/p><p class=\"translation-block\">\u5951\u7d04\u306e\u7d42\u4e86\u306f\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong> \u300d\u306e\u5358\u72ec\u306e\u88c1\u91cf\u306b\u3088\u308b\u3082\u306e\u3067\u3042\u308a\u3001\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong> \u300d\u306f\u3054\u5229\u7528\u8005\u306e\u30a2\u30ab\u30a6\u30f3\u30c8\u3084\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\/REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3078\u306e\u30a2\u30af\u30bb\u30b9\u306e\u7d42\u4e86\u306b\u3064\u3044\u3066\u3001\u4e00\u5207\u306e\u8cac\u4efb\u3092\u8ca0\u3044\u307e\u305b\u3093\u3002<\/p><p>\u30a2\u30ab\u30a6\u30f3\u30c8\u306e\u7d42\u4e86\u306b\u4f34\u3044\u3001\u65b0\u305f\u306a\u30c7\u30fc\u30bf\u304c\u53ce\u96c6\u3055\u308c\u308b\u3053\u3068\u306f\u3042\u308a\u307e\u305b\u3093\u304c\u3001\u4ee5\u524d\u306b\u53ce\u96c6\u3055\u308c\u305f\u30c7\u30fc\u30bf\u306f\u4eee\u540d\u5316\u307e\u305f\u306f\u533f\u540d\u5316\u3055\u308c\u305f\u5f62\u3067\u4fdd\u6301\u3055\u308c\u308b\u5834\u5408\u304c\u3042\u308a\u307e\u3059\u3002<\/p><h2><strong>13. <\/strong><strong>REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u304b\u3089\u306e\u9023\u7d61<\/strong><\/h2><p class=\"translation-block\">\u3054\u5229\u7528\u8005\u306f\u3001REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3084\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3001\u95a2\u9023\u3059\u308b\u7814\u7a76\u306b\u3064\u3044\u3066\u306e\u30a2\u30c3\u30d7\u30c7\u30fc\u30c8\u3084\u305d\u306e\u4ed6\u306e\u8cb4\u91cd\u306a\u60c5\u5831\u306e\u901a\u77e5\u3092\u968f\u6642\u53d7\u3051\u53d6\u308b\u3053\u3068\u304c\u3067\u304d\u307e\u3059\u3002\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u307e\u305f\u306fREMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3092\u5229\u7528\u3059\u308b\u3053\u3068\u3067\u3001\u3054\u5229\u7528\u8005\u306f\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>n\u300d\u304b\u3089\u306e\u9023\u7d61\u3092\u53d7\u3051\u308b\u3053\u3068\u3001\u66f4\u65b0\u60c5\u5831\u3084\u6848\u5185\u3092\u53d7\u3051\u53d6\u308b\u3053\u3068\u306b\u540c\u610f\u3057\u305f\u3082\u306e\u3068\u307f\u306a\u3055\u308c\u307e\u3059\u3002<\/p><h2><strong>14. <\/strong><strong>\u6e96\u62e0\u6cd5\u304a\u3088\u3073\u88c1\u5224\u7ba1\u8f44<\/strong><\/h2><p>\u672c\u898f\u7d04\u306b\u8d77\u56e0\u3059\u308b\u3044\u304b\u306a\u308b\u7d1b\u4e89\u3082\u3001\u62b5\u89e6\u6cd5\u306b\u95a2\u3059\u308b\u898f\u5b9a\u3092\u9664\u304d\u3001\u30aa\u30fc\u30b9\u30c8\u30ea\u30a2\u306e\u6cd5\u5f8b\u306b\u6e96\u62e0\u3057\u3001\u540c\u6cd5\u306b\u5f93\u3063\u3066\u89e3\u91c8\u3055\u308c\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002\n\u30aa\u30fc\u30b9\u30c8\u30ea\u30a2\u30fb\u30a6\u30a3\u30fc\u30f3\u306e\u7ba1\u8f44\u88c1\u5224\u6240\u304c\u3001\u975e\u5c02\u5c5e\u7684\u7ba1\u8f44\u6a29\u3092\u6709\u3059\u308b\u3082\u306e\u3068\u3057\u307e\u3059\u3002<\/p><h2><strong>15. <\/strong><strong>\u898f\u7d04\u306e\u5909\u66f4<\/strong><\/h2><p class=\"translation-block\">\u300c<strong>DupMECP2-Lasst uns MDS heilen<\/strong>\u300d\u306f\u3001\u3044\u3064\u3067\u3082\u672c\u898f\u7d04\u3092\u5909\u66f4\u307e\u305f\u306f\u66f4\u65b0\u3059\u308b\u6a29\u5229\u3092\u6709\u3057\u307e\u3059\u3002\u3044\u304b\u306a\u308b\u5909\u66f4\u3082\u3001\u96fb\u5b50\u30e1\u30fc\u30eb\u307e\u305f\u306f\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u901a\u3058\u3066\u3001\u3054\u5229\u7528\u8005\u306b\u901a\u77e5\u3055\u308c\u307e\u3059\u3002\u5909\u66f4\u5f8c\u3082REMEDS\u30d7\u30e9\u30c3\u30c8\u30d5\u30a9\u30fc\u30e0\u3092\u7d99\u7d9a\u5229\u7528\u3059\u308b\u3053\u3068\u3067\u3001\u3042\u306a\u305f\u306f\u66f4\u65b0\u3055\u308c\u305f\u898f\u7d04\u306b\u540c\u610f\u3057\u305f\u3082\u306e\u3068\u307f\u306a\u3055\u308c\u307e\u3059\u3002<\/p><ol><li style=\"list-style-type: none;\">\u00a0<\/li><\/ol>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Terms and Conditions MECP2 DUPLICATION PATIENT REGISTRY AND SURVEY PLATFORM (REMEDS Platform) Welcome to the MECP2 Duplication Syndrome Patient Registry and Survey Platform called REMEDS or REMEDS Platform.PLEASE READ THE FOLLOWING INFORMATION CAREFULLY. In accessing the REMEDS Platform you represent that you are at least eighteen (18) years of age, or the age of majority in your state, province, or country, or have the legal authority to act on behalf of a minor or an adult unable to act for themself, and you acknowledge that you understand and accept the following terms and conditions. By accessing or participating in the REMEDS Platform, you agree to comply with and be bound [&hellip;]<\/p>\n","protected":false},"author":73,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_jf_save_progress":"","footnotes":""},"class_list":["post-1277","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/pages\/1277","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/users\/73"}],"replies":[{"embeddable":true,"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/comments?post=1277"}],"version-history":[{"count":10,"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/pages\/1277\/revisions"}],"predecessor-version":[{"id":3446,"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/pages\/1277\/revisions\/3446"}],"wp:attachment":[{"href":"https:\/\/remeds.org\/ja\/wp-json\/wp\/v2\/media?parent=1277"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}