{"id":13060,"date":"2020-05-05T14:25:57","date_gmt":"2020-05-05T14:25:57","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=13060"},"modified":"2020-05-05T14:25:57","modified_gmt":"2020-05-05T14:25:57","slug":"%e7%bd%95%e8%a7%81%e7%97%85%e7%9a%84%e6%b2%bb%e7%96%97%e8%b4%b9%e7%94%a8","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/the-cost-of-rare-disease\/","title":{"rendered":"\u7f55\u89c1\u75c5\u7684\u4ee3\u4ef7"},"content":{"rendered":"<p><span data-contrast=\"auto\">\u4e0e\u7f55\u89c1\u75c5\u5171\u5904\u53ef\u80fd\u5f88\u8270\u96be\uff1a\u65e0\u8bba\u662f\u5728\u7cbe\u795e\u4e0a\u3001\u8eab\u4f53\u4e0a\uff0c\u751a\u81f3\u5728\u7ecf\u6d4e\u4e0a\uff0c\u90fd\u4f1a\u8ba9\u4eba\u7b4b\u75b2\u529b\u5c3d\u3002.&nbsp;<\/span><span data-contrast=\"auto\">A&nbsp;<\/span><span data-contrast=\"auto\">2013<\/span><span data-contrast=\"auto\">&nbsp;\u4e00\u9879\u540d\u4e3a&nbsp;<\/span><a href=\"https:\/\/globalgenes.org\/wp-content\/uploads\/2013\/04\/ShireReport-1.pdf\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">\u7f55\u89c1\u75c5\u5f71\u54cd\u62a5\u544a<\/span><\/a><span data-contrast=\"auto\">&nbsp;\uff08\u8be5\u8c03\u67e5\u5728\u7f8e\u56fd\u548c\u82f1\u56fd\u5f00\u5c55\uff09\u5c31\u7f55\u89c1\u75c5\u7684\u5f71\u54cd\uff0c\u5f81\u8be2\u4e86\u60a3\u8005\u3001\u533b\u7597\u4fdd\u5065\u4e13\u4e1a\u4eba\u5458\u4ee5\u53ca\u652f\u4ed8\u65b9\uff08\u5373\u5728\u5404\u56fd\u533b\u7597\u4f53\u7cfb\u4e2d\u8d1f\u8d23\u533b\u7597\u4fdd\u5065\u8d44\u91d1\u7b79\u63aa\u7684\u673a\u6784\uff09\u7684\u770b\u6cd5\u3002 \u53c2\u4e0e\u8c03\u67e5\u768420\u5bb6\u652f\u4ed8\u65b9\u4e2d\uff0c\u51e0\u4e4e\u6240\u6709\u673a\u6784\u90fd\u8868\u793a\uff0c\u4e0e\u5e38\u89c1\u75be\u75c5\u76f8\u6bd4\uff0c\u7f55\u89c1\u75c5\u7684\u6cbb\u7597\u8d39\u7528\u76f8\u5bf9\u66f4\u9ad8\uff0c\u4e14\u8d39\u7528\u589e\u957f\u901f\u5ea6\u66f4\u5feb\u3002.<\/span><span data-contrast=\"auto\">&nbsp;\u8be5\u62a5\u544a\u8fd8\u6307\u51fa\uff0c&nbsp;<\/span><span data-contrast=\"auto\">55%\u540d\u7f8e\u56fd\u53d7\u8bbf\u8005\u4ea7\u751f\u4e86\u4fdd\u9669\u672a\u8986\u76d6\u7684\u76f4\u63a5\u533b\u7597\u8d39\u7528<\/span><span data-contrast=\"auto\">, \uff0c\u4ee5\u53ca<\/span><span data-contrast=\"auto\">&nbsp;\u5728\u82f1\u56fd\uff0c18%\u4e0d\u5728\u56fd\u6c11\u533b\u7597\u670d\u52a1\u4f53\u7cfb\u7684\u62a5\u9500\u8303\u56f4\u5185\u3002.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><i><span data-contrast=\"auto\">C<\/span><\/i><\/b><b><i><span data-contrast=\"auto\">\u60a3\u6709\u7f55\u89c1\u75c5\u7684\u751f\u6d3b\u6210\u672c<\/span><\/i><\/b><\/p>\n<p><span data-contrast=\"auto\">\u60a3\u6709\u4efb\u4f55\u5065\u5eb7\u95ee\u9898\u6240\u4ea7\u751f\u7684\u751f\u6d3b\u8d39\u7528\u901a\u5e38\u5305\u62ec\uff1a<\/span>&nbsp;<\/p>\n<ul>\n<li><b><span data-contrast=\"auto\">\u76f4\u63a5\u533b\u7597\u8d39\u7528<\/span><\/b><span data-contrast=\"auto\">\u202f\u2013 \u836f\u54c1\u3001\u533b\u7597\u8bbe\u5907\u3001\u533b\u5b66\u68c0\u67e5\u3001\u4e13\u79d1\u95e8\u8bca\u3001\u4f4f\u9662\u6cbb\u7597\u3001\u533b\u7597\u8f6c\u8fd0<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">\u76f4\u63a5\u975e\u533b\u7597\u8d39\u7528<\/span><\/b><span data-contrast=\"auto\">\u2013 \u4e13\u4e1a\u62a4\u7406\u4eba\u5458\u3001\u975e\u533b\u7597\u8fd0\u8f93\u3001\u793e\u4f1a\u670d\u52a1<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">\u95f4\u63a5\u8d39\u7528\u2014\u2014<\/span><\/b><span data-contrast=\"auto\">\u65e0\u6cd5\u5de5\u4f5c\u3001\u8be5\u4eba\u5458\u63d0\u524d\u9000\u4f11\u6216\u9700\u8981\u7167\u6599<\/span><span data-contrast=\"auto\">\u7ed9\u4e88\u8005<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">\u4ee5\u4e0b\u5217\u4e3e\u4e86\u5176\u4e2d\u4e00\u4e9b\u6700\u5177\u6311\u6218\u6027\u7684\u8d22\u52a1\u5f71\u54cd&nbsp;<\/span><span data-contrast=\"auto\">\u89c1\u4e8e\u7f55\u89c1\u75c5\u3002\u6b64\u5916\u8fd8\u5305\u62ec&nbsp;<\/span><span data-contrast=\"auto\">\u60a3\u8005\u7fa4\u4f53\u4e0e\u5236\u836f\u884c\u4e1a&nbsp;<\/span><span data-contrast=\"auto\">\u4e3e\u63aa&nbsp;<\/span><span data-contrast=\"auto\">\u65e8\u5728\u5e2e\u52a9\u5e94\u5bf9\u8fd9\u4e9b\u6311\u6218\u3002<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">\u751f\u6d3b\u65b9\u5f0f\u6539\u53d8\u5e26\u6765\u7684\u7ecf\u6d4e\u8d1f\u62c5<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u5bf9\u4e8e\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u7b49\u7f55\u89c1\u75c5\uff0c\u6839\u636e\u75be\u75c5\u7684\u590d\u6742\u7a0b\u5ea6\u4e0d\u540c\uff0c\u60a3\u8005\u548c\/\u6216\u62a4\u7406\u4eba\u5458\u53ef\u80fd\u4e0d\u5f97\u4e0d\u79bb\u5f00<\/span><span data-contrast=\"auto\">&nbsp;\u6709\u85aa\u5de5\u4f5c<\/span><span data-contrast=\"auto\">,&nbsp;<\/span><span data-contrast=\"auto\">\u51cf\u5c11&nbsp;<\/span><span data-contrast=\"auto\">\u6bcf\u5468\u5de5\u4f5c\u65f6\u95f4\uff0c\u751a\u81f3\u6bd4\u9884\u671f\u66f4\u65e9\u9000\u4f11\u3002.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">\u533b\u7597\u4fdd\u9669\u8d1f\u62c5<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u9274\u4e8e\u5728\u2026\u2026\u65b9\u9762\u7684\u4e13\u4e1a\u77e5\u8bc6\uff0c&nbsp;<\/span><span data-contrast=\"auto\">\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">D<\/span><span data-contrast=\"auto\">\u7531\u4e8e\u8be5\u75be\u75c5\u7684\u53d1\u75c5\u8303\u56f4\u6709\u9650\uff0c\u60a3\u8005\u53ef\u80fd\u96be\u4ee5\u5728\u5176\u6240\u5728\u5730\u533a\u7684\u533b\u751f\u90a3\u91cc\u83b7\u5f97\u6807\u51c6\u6cbb\u7597\u3002&nbsp;<\/span><span data-contrast=\"auto\">\u4fdd\u9669&nbsp;<\/span><span data-contrast=\"auto\">\u7f51\u7edc\u3002.&nbsp;<\/span><span data-contrast=\"auto\">\u5bf9\u67d0\u4e9b\u4eba\u6765\u8bf4\uff0c\u4fdd\u9669\u8303\u56f4\u4ec5\u9650\u4e8e\u672c\u5dde\u5883\u5185<\/span><span data-contrast=\"auto\">. \u9664\u4e86\u533b\u7597\u4fdd\u969c\u4e4b\u5916\uff0c\u8bb8\u591a\u60a3\u8005\u53ef\u80fd\u8fd8\u9762\u4e34\u5904\u65b9\u836f\u5e26\u6765\u7684\u7ecf\u6d4e\u8d1f\u62c5\u3002.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">\u65c5\u884c&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">\u6210\u672c&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">\u8d1f\u62c5<\/span><\/b><\/p>\n<p><span data-contrast=\"auto\">\u7f55\u89c1\u75c5\u5e26\u6765\u7684\u53e6\u4e00\u9879\u9690\u6027\u6210\u672c\u662f&nbsp;<\/span><span data-contrast=\"auto\">\u65c5\u884c\uff1a<\/span><span data-contrast=\"auto\">&nbsp;attending doctor visits, outpatient appointments, clinical research visits and hospital stays all cost money. Almost every person with a rare disease could incur travel costs; for example, when they visit dedicated centers away from home or because disease symptoms limit their everyday mobility.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-ccp-props=\"{}\">&nbsp;<\/span><b><i><span data-contrast=\"auto\">\u4e3a\u7f55\u89c1\u75c5\u60a3\u8005\u63d0\u4f9b\u63f4\u52a9\u7684\u7ec4\u7ec7\uff1a<\/span><\/i><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">Patient Services, Inc<\/span><\/i><span data-contrast=\"auto\">: \u4e3a\u60a3\u6709\u7279\u5b9a\u7f55\u89c1\u75c5\u7684\u60a3\u8005\u63d0\u4f9b\u7ecf\u6d4e\u652f\u6301\u548c\u6307\u5bfc<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;\u7f8e\u56fd\u7684\u6162\u6027\u75c5\u3002\u6b64\u5916\uff0c\u8fd8\u63d0\u4f9b\u5404\u79cd\u514d\u8d39\u7684\u6cd5\u5f8b\u670d\u52a1<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"http:\/\/www.patientservicesinc.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">http:\/\/www.patientservicesinc.org\/<\/span><\/a><span data-contrast=\"auto\">)<\/span><\/li>\n<li><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;134233279&quot;:true}\">&nbsp;<\/span><i><span data-contrast=\"auto\">EveryLife<\/span><\/i><i><span data-contrast=\"auto\">&nbsp;\u8be5\u57fa\u91d1\u4f1a\u7684\u201c\u7a00\u6709\u6350\u8d60\u8ba1\u5212\u201d<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">\u201cRare Giving\u201d\u662f\u8be5\u7ec4\u7ec7\u7684&nbsp;<\/span><span data-contrast=\"auto\">EveryLife<\/span><span data-contrast=\"auto\">&nbsp;Foundation for Rare Diseases to support individual rare disease patients as well as organizations that promote collaboration across rare diseases and engage patients, researchers and others in the community in public policy<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"https:\/\/everylifefoundation.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/everylifefoundation.org<\/span><\/a><span data-contrast=\"auto\">)&nbsp;<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">NORD \u60a3\u8005\u63f4\u52a9\u8ba1\u5212 (<\/span><\/i><i><span data-contrast=\"auto\">RareCare<\/span><\/i><span data-contrast=\"auto\">)<\/span><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">\u81ea1987\u5e74\u4ee5\u6765\uff0cNORD\u4e00\u76f4\u63d0\u4f9b\u63f4\u52a9\u9879\u76ee\uff0c\u4ee5\u5e2e\u52a9\u60a3\u8005\u83b7\u5f97&nbsp;<\/span><span data-contrast=\"auto\">\u6551\u547d<\/span><span data-contrast=\"auto\">&nbsp;\u6216\u4ed6\u4eec\u539f\u672c\u65e0\u529b\u8d1f\u62c5\u7684\u7ef4\u6301\u751f\u547d\u6240\u9700\u7684\u836f\u7269\u3002\u8fd9\u4e9b\u9879\u76ee\u63d0\u4f9b\u836f\u54c1\u3001\u4fdd\u9669\u8d39\u548c\u81ea\u4ed8\u989d\u65b9\u9762\u7684\u7ecf\u6d4e\u63f4\u52a9\u3001\u8bca\u65ad\u68c0\u6d4b\u63f4\u52a9\uff0c\u4ee5\u53ca\u53c2\u52a0\u4e34\u5e8a\u8bd5\u9a8c\u6216\u54a8\u8be2\u75be\u75c5\u4e13\u5bb6\u6240\u9700\u7684\u4ea4\u901a\u8865\u52a9\u3002.<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"https:\/\/rarediseases.org\/for-patients-and-families\/help-access-medications\/patient-assistance-programs-2\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/rarediseases.org\/for-patients-and-families\/help-access-medications\/patient-assistance-programs-2\/<\/span><\/a><span data-contrast=\"auto\">)&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">\u822a\u7a7a\u6148\u5584\u7f51\u7edc\uff08\u5929\u4f7f\u822a\u73ed\uff09<\/span><\/i><i><span data-contrast=\"auto\">:<\/span><\/i><i><span data-contrast=\"auto\">&nbsp;<\/span><\/i><span data-contrast=\"auto\">\u201c\u822a\u7a7a\u6148\u5584\u7f51\u7edc\u201d\u662f\u4e00\u5bb6\u6148\u5584\u7ec4\u7ec7\uff0c\u81f4\u529b\u4e8e\u4e3a\u56e0\u5bb6\u5ead\u3001\u793e\u533a\u6216\u56fd\u5bb6\u5371\u673a\u800c\u9700\u8981\u524d\u5f80\u4e13\u4e1a\u533b\u7597\u673a\u6784\u6216\u8fdc\u65b9\u76ee\u7684\u5730\u3001\u4e14\u5bfb\u6c42\u514d\u8d39\u822a\u7a7a\u8fd0\u8f93\u7684\u56f0\u96be\u4eba\u7fa4\u63d0\u4f9b\u5e2e\u52a9\u3002.<\/span><span data-contrast=\"auto\">&nbsp;\u5b89\u5409<\/span><span data-contrast=\"auto\">l<\/span><span data-contrast=\"auto\">&nbsp;Flight\u8fd8\u5c06\u4e3a\u53c2\u52a0\u4e34\u5e8a\u8bd5\u9a8c\u7684\u65c5\u5ba2\u63d0\u4f9b\u534f\u8c03\u670d\u52a1\u3002.&nbsp;<\/span><span data-contrast=\"auto\">(<\/span><a href=\"http:\/\/aircharitynetwork.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">http:\/\/aircharitynetwork.org\/<\/span><\/a><span data-contrast=\"auto\">)<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">\u5904\u65b9\u836f\u63f4\u52a9\u4f19\u4f34\u5173\u7cfb\uff08PPA\uff09<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">\u7f8e\u56fd\u7684\u751f\u7269\u5236\u836f\u7814\u53d1\u4f01\u4e1a\u80a9\u8d1f\u7740\u6539\u5584\u60a3\u8005\u5065\u5eb7\u3001\u63a8\u52a8\u533b\u7597\u521b\u65b0\u4ee5\u53ca\u4fc3\u8fdb\u7ecf\u6d4e\u589e\u957f\u7684\u4f7f\u547d\u3002\u5b83\u4eec\u7814\u53d1\u7684\u836f\u7269\u7ed9\u4eba\u4eec\u5e26\u6765\u4e86\u5e0c\u671b\uff1a\u5e0c\u671b\u80fd\u591f\u627e\u5230\u6cbb\u6108\u65b9\u6cd5\uff0c\u5e0c\u671b\u6cbb\u7597\u80fd\u591f\u594f\u6548\uff0c\u5e0c\u671b\u60a3\u8005\u7684\u751f\u6d3b\u80fd\u591f&nbsp;<\/span><span data-contrast=\"auto\">\u6709\u6240\u6539\u8fdb<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;<\/span><a href=\"https:\/\/medicineassistancetool.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/medicineassistancetool.org\/<\/span><\/a><span data-contrast=\"auto\">&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><span data-contrast=\"auto\">\u7f8e\u56fd\u56fd\u7acb\u536b\u751f\u7814\u7a76\u9662\u5bb6\u5ead\u65c5\u9986<\/span><i><span data-contrast=\"auto\">:&nbsp;<\/span><\/i><span data-contrast=\"auto\">\u4e00\u4e2a\u6e29\u99a8\u5982\u5bb6\u7684\u4f11\u61a9\u573a\u6240\uff0c\u4e13\u4e3a\u6b63\u5728\u8be5\u673a\u6784\u63a5\u53d7\u6cbb\u7597\u7684\u6210\u5e74\u60a3\u8005\u7684\u5bb6\u4eba\u548c\u4eb2\u53cb\u63d0\u4f9b<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">\u7f8e\u56fd\u56fd\u7acb\u536b\u751f\u7814\u7a76\u9662\u4e34\u5e8a\u4e2d\u5fc3\uff08\u4f4d\u4e8e\u9a6c\u91cc\u5170\u5dde\u8d1d\u585e\u65af\u8fbe\uff09<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"https:\/\/clinicalcenter.nih.gov\/familylodge\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/clinicalcenter.nih.gov\/familylodge\/<\/span><\/a><span data-contrast=\"auto\">)<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;134233279&quot;:true,&quot;335559685&quot;:720}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u7f55\u89c1\u75c5\u7ed9\u5bb6\u5ead\u5e26\u6765\u7684\u7ecf\u6d4e\u8d1f\u62c5&nbsp;<\/span><span data-contrast=\"auto\">\u53ef\u4ee5\u662f<\/span><span data-contrast=\"auto\">&nbsp;\u867d\u7136\u5f88\u9ad8\uff0c\u4f46\u6709\u5f88\u591a\u652f\u6301\u6027\u7684&nbsp;<\/span><span data-contrast=\"auto\">\u7a0b\u5e8f<\/span><span data-contrast=\"auto\">&nbsp;\u53ef\u7528<\/span><span data-contrast=\"auto\">le<\/span><span data-contrast=\"auto\">, \uff0c\u7279\u522b\u662f\u5728\u7f8e\u56fd<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;\u6210\u672c\u7279\u522b\u9ad8\u7684\u5730\u65b9<\/span><span data-contrast=\"auto\">. \u4f60\u7528\u8fc7\u8fd9\u4e2a\u5417\uff1f<\/span><span data-contrast=\"auto\">&nbsp;\u6709\u54ea\u4e9b\u53ef\u7528\u7684\u670d\u52a1\uff1f<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u4ee5\u4e0b\u94fe\u63a5\u662f\u4e00\u4e2a\u975e\u5e38\u6709\u7528\u7684\u8d44\u6e90\uff0c\u5c06\u4e0a\u8ff0\u63d0\u5230\u7684\u8bb8\u591a\u9879\u76ee\u6c47\u96c6\u4e8e\u6b64\u3002.&nbsp;<\/span><a href=\"https:\/\/everylifefoundation.org\/financial-support\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/everylifefoundation.org\/financial-support\/.<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Living with a rare disease can be hard: mentally, physically, and even financially draining.&nbsp;A&nbsp;2013&nbsp;survey called the&nbsp;Rare Disease Impact Report&nbsp;(conducted in the US and UK) asked patients, healthcare professionals and payers [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":13061,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67],"tags":[83,89,56,91,92,93,90,82,52],"class_list":["post-13060","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","tag-blood-cancer","tag-cost-of-living","tag-erdheim-chester","tag-financial-help","tag-healthcare-costs","tag-insurance-help","tag-medical-bills","tag-rare-cancer","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/13060","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=13060"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/13060\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/13061"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=13060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=13060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=13060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}