{"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":"%cf%84%ce%bf-%ce%ba%cf%8c%cf%83%cf%84%ce%bf%cf%82-%cf%84%cf%89%ce%bd-%cf%83%cf%80%ce%ac%ce%bd%ce%b9%cf%89%ce%bd-%ce%b1%cf%83%ce%b8%ce%b5%ce%bd%ce%b5%ce%b9%cf%8e%ce%bd-2","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/el\/the-cost-of-rare-disease\/","title":{"rendered":"\u03a4\u03bf \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2 \u03c4\u03c9\u03bd \u03c3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd"},"content":{"rendered":"<p><span data-contrast=\"auto\">\u0397 \u03b6\u03c9\u03ae \u03bc\u03b5 \u03bc\u03b9\u03b1 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1 \u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b4\u03cd\u03c3\u03ba\u03bf\u03bb\u03b7: \u03b5\u03be\u03b1\u03bd\u03c4\u03bb\u03b7\u03c4\u03b9\u03ba\u03ae \u03c8\u03c5\u03c7\u03b9\u03ba\u03ac, \u03c3\u03c9\u03bc\u03b1\u03c4\u03b9\u03ba\u03ac, \u03b1\u03bb\u03bb\u03ac \u03ba\u03b1\u03b9 \u03bf\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ac.&nbsp;<\/span><span data-contrast=\"auto\">A&nbsp;<\/span><span data-contrast=\"auto\">2013<\/span><span data-contrast=\"auto\">&nbsp;\u03ad\u03c1\u03b5\u03c5\u03bd\u03b1 \u03bc\u03b5 \u03c4\u03af\u03c4\u03bb\u03bf&nbsp;<\/span><a href=\"https:\/\/globalgenes.org\/wp-content\/uploads\/2013\/04\/ShireReport-1.pdf\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">\u0388\u03ba\u03b8\u03b5\u03c3\u03b7 \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03b5\u03c0\u03b9\u03c0\u03c4\u03ce\u03c3\u03b5\u03b9\u03c2 \u03c4\u03c9\u03bd \u03c3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03b9\u03ce\u03bd<\/span><\/a><span data-contrast=\"auto\">&nbsp;(\u03b7 \u03bf\u03c0\u03bf\u03af\u03b1 \u03b4\u03b9\u03b5\u03be\u03ae\u03c7\u03b8\u03b7 \u03c3\u03c4\u03b9\u03c2 \u0397\u03a0\u0391 \u03ba\u03b1\u03b9 \u03c4\u03bf \u0397\u03bd\u03c9\u03bc\u03ad\u03bd\u03bf \u0392\u03b1\u03c3\u03af\u03bb\u03b5\u03b9\u03bf) \u03b6\u03ae\u03c4\u03b7\u03c3\u03b5 \u03b1\u03c0\u03cc \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2, \u03b5\u03c0\u03b1\u03b3\u03b3\u03b5\u03bb\u03bc\u03b1\u03c4\u03af\u03b5\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2 \u03ba\u03b1\u03b9 \u03c6\u03bf\u03c1\u03b5\u03af\u03c2 \u03c7\u03c1\u03b7\u03bc\u03b1\u03c4\u03bf\u03b4\u03cc\u03c4\u03b7\u03c3\u03b7\u03c2 (\u03c0\u03bf\u03c5 \u03c7\u03c1\u03b7\u03bc\u03b1\u03c4\u03bf\u03b4\u03bf\u03c4\u03bf\u03cd\u03bd \u03c4\u03b7\u03bd \u03c5\u03b3\u03b5\u03b9\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae \u03c0\u03b5\u03c1\u03af\u03b8\u03b1\u03bb\u03c8\u03b7 \u03c3\u03c4\u03bf \u03c0\u03bb\u03b1\u03af\u03c3\u03b9\u03bf \u03c4\u03bf\u03c5 \u03c3\u03c5\u03c3\u03c4\u03ae\u03bc\u03b1\u03c4\u03bf\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2 \u03ba\u03ac\u03b8\u03b5 \u03c7\u03ce\u03c1\u03b1\u03c2) \u03bd\u03b1 \u03b5\u03ba\u03c6\u03c1\u03ac\u03c3\u03bf\u03c5\u03bd \u03c4\u03b9\u03c2 \u03b1\u03c0\u03cc\u03c8\u03b5\u03b9\u03c2 \u03c4\u03bf\u03c5\u03c2 \u03c3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03c4\u03bf\u03bd \u03b1\u03bd\u03c4\u03af\u03ba\u03c4\u03c5\u03c0\u03bf \u03c4\u03c9\u03bd \u03c3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03c9\u03bd. \u03a3\u03c7\u03b5\u03b4\u03cc\u03bd \u03cc\u03bb\u03bf\u03b9 \u03bf\u03b9 20 \u03c6\u03bf\u03c1\u03b5\u03af\u03c2 \u03c7\u03c1\u03b7\u03bc\u03b1\u03c4\u03bf\u03b4\u03cc\u03c4\u03b7\u03c3\u03b7\u03c2 \u03c0\u03bf\u03c5 \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03b5\u03af\u03c7\u03b1\u03bd \u03c3\u03c4\u03b7\u03bd \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1 \u03b1\u03bd\u03ad\u03c6\u03b5\u03c1\u03b1\u03bd \u03cc\u03c4\u03b9 \u03b7 \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b1 \u03bc\u03b9\u03b1\u03c2 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1\u03c2 \u03bd\u03cc\u03c3\u03bf\u03c5 \u03b5\u03af\u03bd\u03b1\u03b9 \u03c3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03c0\u03b9\u03bf \u03b4\u03b1\u03c0\u03b1\u03bd\u03b7\u03c1\u03ae \u03ba\u03b1\u03b9 \u03cc\u03c4\u03b9 \u03c4\u03bf \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2 \u03b1\u03c5\u03be\u03ac\u03bd\u03b5\u03c4\u03b1\u03b9 \u03c4\u03b1\u03c7\u03cd\u03c4\u03b5\u03c1\u03b1, \u03c3\u03b5 \u03c3\u03cd\u03b3\u03ba\u03c1\u03b9\u03c3\u03b7 \u03bc\u03b5 \u03c4\u03b9\u03c2 \u03c0\u03b9\u03bf \u03c3\u03c5\u03c7\u03bd\u03ad\u03c2 \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03b9\u03c2.<\/span><span data-contrast=\"auto\">&nbsp;\u03a3\u03c4\u03b7\u03bd \u03ad\u03ba\u03b8\u03b5\u03c3\u03b7 \u03b1\u03c5\u03c4\u03ae \u03b1\u03bd\u03b1\u03c6\u03ad\u03c1\u03b5\u03c4\u03b1\u03b9 \u03b5\u03c0\u03af\u03c3\u03b7\u03c2 \u03cc\u03c4\u03b9&nbsp;<\/span><span data-contrast=\"auto\">\u03a4\u03bf 55% \u03c4\u03c9\u03bd \u03b5\u03c1\u03c9\u03c4\u03b7\u03b8\u03ad\u03bd\u03c4\u03c9\u03bd \u03c3\u03c4\u03b9\u03c2 \u0397\u03a0\u0391 \u03b5\u03af\u03c7\u03b5 \u03ac\u03bc\u03b5\u03c3\u03b1 \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03ac \u03ad\u03be\u03bf\u03b4\u03b1 \u03c0\u03bf\u03c5 \u03b4\u03b5\u03bd \u03ba\u03b1\u03bb\u03cd\u03c0\u03c4\u03bf\u03bd\u03c4\u03b1\u03bd \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd \u03b1\u03c3\u03c6\u03ac\u03bb\u03b9\u03c3\u03b7<\/span><span data-contrast=\"auto\">, \u03ba\u03b1\u03b9<\/span><span data-contrast=\"auto\">&nbsp;\u03a4\u03bf 18% \u03c3\u03c4\u03bf \u0397\u03bd\u03c9\u03bc\u03ad\u03bd\u03bf \u0392\u03b1\u03c3\u03af\u03bb\u03b5\u03b9\u03bf \u03b4\u03b5\u03bd \u03ba\u03b1\u03bb\u03cd\u03c0\u03c4\u03b5\u03c4\u03b1\u03b9 \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd \u0395\u03b8\u03bd\u03b9\u03ba\u03ae \u03a5\u03c0\u03b7\u03c1\u03b5\u03c3\u03af\u03b1 \u03a5\u03b3\u03b5\u03af\u03b1\u03c2.<\/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\">\u03a4\u03bf \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2 \u03c4\u03b7\u03c2 \u03b6\u03c9\u03ae\u03c2 \u03bc\u03b5 \u03bc\u03b9\u03b1 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1<\/span><\/i><\/b><\/p>\n<p><span data-contrast=\"auto\">\u03a4\u03b1 \u03ad\u03be\u03bf\u03b4\u03b1 \u03b4\u03b9\u03b1\u03b2\u03af\u03c9\u03c3\u03b7\u03c2 \u03b3\u03b9\u03b1 \u03ac\u03c4\u03bf\u03bc\u03b1 \u03bc\u03b5 \u03bf\u03c0\u03bf\u03b9\u03b1\u03b4\u03ae\u03c0\u03bf\u03c4\u03b5 \u03c0\u03ac\u03b8\u03b7\u03c3\u03b7 \u03c0\u03b5\u03c1\u03b9\u03bb\u03b1\u03bc\u03b2\u03ac\u03bd\u03bf\u03c5\u03bd \u03b3\u03b5\u03bd\u03b9\u03ba\u03ac:<\/span>&nbsp;<\/p>\n<ul>\n<li><b><span data-contrast=\"auto\">\u0386\u03bc\u03b5\u03c3\u03b5\u03c2 \u03b4\u03b1\u03c0\u03ac\u03bd\u03b5\u03c2 \u03c5\u03b3\u03b5\u03b9\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae\u03c2 \u03c0\u03b5\u03c1\u03af\u03b8\u03b1\u03bb\u03c8\u03b7\u03c2<\/span><\/b><span data-contrast=\"auto\">\u202f\u2013 \u03c6\u03ac\u03c1\u03bc\u03b1\u03ba\u03b1, \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03cc\u03c2 \u03b5\u03be\u03bf\u03c0\u03bb\u03b9\u03c3\u03bc\u03cc\u03c2, \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03ad\u03c2 \u03b5\u03be\u03b5\u03c4\u03ac\u03c3\u03b5\u03b9\u03c2, \u03b5\u03c0\u03b9\u03c3\u03ba\u03ad\u03c8\u03b5\u03b9\u03c2 \u03c3\u03b5 \u03b5\u03b9\u03b4\u03b9\u03ba\u03bf\u03cd\u03c2, \u03bd\u03bf\u03c3\u03b7\u03bb\u03b5\u03af\u03b5\u03c2, \u03bc\u03b5\u03c4\u03b1\u03c6\u03bf\u03c1\u03ad\u03c2 \u03b3\u03b9\u03b1 \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03bf\u03cd\u03c2 \u03bb\u03cc\u03b3\u03bf\u03c5\u03c2<\/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\">\u0386\u03bc\u03b5\u03c3\u03b5\u03c2 \u03b4\u03b1\u03c0\u03ac\u03bd\u03b5\u03c2 \u03b5\u03ba\u03c4\u03cc\u03c2 \u03c4\u03bf\u03c5 \u03c4\u03bf\u03bc\u03ad\u03b1 \u03c4\u03b7\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2<\/span><\/b><span data-contrast=\"auto\">\u2013 \u03b5\u03c0\u03b1\u03b3\u03b3\u03b5\u03bb\u03bc\u03b1\u03c4\u03af\u03b5\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2, \u03bc\u03b5\u03c4\u03b1\u03c6\u03bf\u03c1\u03ad\u03c2 \u03b5\u03ba\u03c4\u03cc\u03c2 \u03c4\u03bf\u03c5 \u03c4\u03bf\u03bc\u03ad\u03b1 \u03c4\u03b7\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2, \u03ba\u03bf\u03b9\u03bd\u03c9\u03bd\u03b9\u03ba\u03ad\u03c2 \u03c5\u03c0\u03b7\u03c1\u03b5\u03c3\u03af\u03b5\u03c2<\/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\">\u0388\u03bc\u03bc\u03b5\u03c3\u03b1 \u03ad\u03be\u03bf\u03b4\u03b1 \u2013<\/span><\/b><span data-contrast=\"auto\">\u03b1\u03b4\u03c5\u03bd\u03b1\u03bc\u03af\u03b1 \u03b5\u03c1\u03b3\u03b1\u03c3\u03af\u03b1\u03c2, \u03c0\u03c1\u03cc\u03c9\u03c1\u03b7 \u03c3\u03c5\u03bd\u03c4\u03b1\u03be\u03b9\u03bf\u03b4\u03cc\u03c4\u03b7\u03c3\u03b7 \u03c4\u03bf\u03c5 \u03b1\u03c4\u03cc\u03bc\u03bf\u03c5 \u03ae \u03c0\u03b1\u03c1\u03bf\u03c7\u03ae \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1\u03c2<\/span><span data-contrast=\"auto\">\u03b4\u03c9\u03c1\u03b7\u03c4\u03ae\u03c2<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">\u03a0\u03b1\u03c1\u03b1\u03ba\u03ac\u03c4\u03c9 \u03b8\u03b1 \u03b2\u03c1\u03b5\u03af\u03c4\u03b5 \u03bc\u03b5\u03c1\u03b9\u03ba\u03ad\u03c2 \u03b1\u03c0\u03cc \u03c4\u03b9\u03c2 \u03c0\u03b9\u03bf \u03c3\u03bf\u03b2\u03b1\u03c1\u03ad\u03c2 \u03bf\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ad\u03c2 \u03b5\u03c0\u03b9\u03c0\u03c4\u03ce\u03c3\u03b5\u03b9\u03c2&nbsp;<\/span><span data-contrast=\"auto\">\u03c0\u03bf\u03c5 \u03c0\u03b1\u03c1\u03b1\u03c4\u03b7\u03b5\u03af\u03c4\u03b1\u03b9 \u03c3\u03b5 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03b9\u03c2. \u03a0\u03b5\u03c1\u03b9\u03bb\u03b1\u03bc\u03b2\u03ac\u03bd\u03bf\u03bd\u03c4\u03b1\u03b9 \u03b5\u03c0\u03af\u03c3\u03b7\u03c2&nbsp;<\/span><span data-contrast=\"auto\">\u03bf\u03bc\u03ac\u03b4\u03b1 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03ba\u03b1\u03b9 \u03c6\u03b1\u03c1\u03bc\u03b1\u03ba\u03b5\u03c5\u03c4\u03b9\u03ba\u03ae \u03b2\u03b9\u03bf\u03bc\u03b7\u03c7\u03b1\u03bd\u03af\u03b1&nbsp;<\/span><span data-contrast=\"auto\">\u03c0\u03c1\u03c9\u03c4\u03bf\u03b2\u03bf\u03c5\u03bb\u03af\u03b5\u03c2&nbsp;<\/span><span data-contrast=\"auto\">\u03c0\u03bf\u03c5 \u03ad\u03c7\u03b5\u03b9 \u03c3\u03c7\u03b5\u03b4\u03b9\u03b1\u03c3\u03c4\u03b5\u03af \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03b5\u03b9 \u03c3\u03c4\u03b7\u03bd \u03b1\u03bd\u03c4\u03b9\u03bc\u03b5\u03c4\u03ce\u03c0\u03b9\u03c3\u03b7 \u03b1\u03c5\u03c4\u03ce\u03bd \u03c4\u03c9\u03bd \u03c0\u03c1\u03bf\u03ba\u03bb\u03ae\u03c3\u03b5\u03c9\u03bd.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">\u039f\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae \u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7 \u03bb\u03cc\u03b3\u03c9 \u03b1\u03bb\u03bb\u03b1\u03b3\u03ae\u03c2 \u03c4\u03bf\u03c5 \u03c4\u03c1\u03cc\u03c0\u03bf\u03c5 \u03b6\u03c9\u03ae\u03c2<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u03a3\u03b5 \u03c0\u03b5\u03c1\u03af\u03c0\u03c4\u03c9\u03c3\u03b7 \u03c3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03b9\u03ce\u03bd, \u03cc\u03c0\u03c9\u03c2 \u03b7 \u03bd\u03cc\u03c3\u03bf\u03c2 Erdheim-Chester, \u03b1\u03bd\u03ac\u03bb\u03bf\u03b3\u03b1 \u03bc\u03b5 \u03c4\u03b9\u03c2 \u03b4\u03b9\u03ac\u03c6\u03bf\u03c1\u03b5\u03c2 \u03c0\u03c4\u03c5\u03c7\u03ad\u03c2 \u03c4\u03b7\u03c2 \u03bd\u03cc\u03c3\u03bf\u03c5, \u03bf \u03b1\u03c3\u03b8\u03b5\u03bd\u03ae\u03c2 \u03ae\/\u03ba\u03b1\u03b9 \u03bf \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ae\u03c2 \u03b5\u03bd\u03b4\u03ad\u03c7\u03b5\u03c4\u03b1\u03b9 \u03bd\u03b1 \u03c7\u03c1\u03b5\u03b9\u03b1\u03c3\u03c4\u03b5\u03af \u03bd\u03b1 \u03b1\u03c0\u03bf\u03c7\u03c9\u03c1\u03ae\u03c3\u03b5\u03b9<\/span><span data-contrast=\"auto\">&nbsp;\u03bc\u03b9\u03c3\u03b8\u03c9\u03c4\u03ae \u03b1\u03c0\u03b1\u03c3\u03c7\u03cc\u03bb\u03b7\u03c3\u03b7<\/span><span data-contrast=\"auto\">,&nbsp;<\/span><span data-contrast=\"auto\">\u03bc\u03b5\u03af\u03c9\u03c3\u03b7&nbsp;<\/span><span data-contrast=\"auto\">\u03b5\u03b2\u03b4\u03bf\u03bc\u03b1\u03b4\u03b9\u03b1\u03af\u03b5\u03c2 \u03ce\u03c1\u03b5\u03c2 \u03b5\u03c1\u03b3\u03b1\u03c3\u03af\u03b1\u03c2, \u03ae \u03b1\u03ba\u03cc\u03bc\u03b1 \u03ba\u03b1\u03b9 \u03bd\u03b1 \u03c3\u03c5\u03bd\u03c4\u03b1\u03be\u03b9\u03bf\u03b4\u03bf\u03c4\u03b7\u03b8\u03bf\u03cd\u03bd \u03bd\u03c9\u03c1\u03af\u03c4\u03b5\u03c1\u03b1 \u03b1\u03c0\u03cc \u03c4\u03bf \u03b1\u03bd\u03b1\u03bc\u03b5\u03bd\u03cc\u03bc\u03b5\u03bd\u03bf.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">\u03a4\u03bf \u03b2\u03ac\u03c1\u03bf\u03c2 \u03c4\u03b7\u03c2 \u03b1\u03c3\u03c6\u03ac\u03bb\u03b9\u03c3\u03b7\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u0394\u03b5\u03b4\u03bf\u03bc\u03ad\u03bd\u03bf\u03c5 \u03cc\u03c4\u03b9 \u03b7 \u03b5\u03be\u03b5\u03b9\u03b4\u03af\u03ba\u03b5\u03c5\u03c3\u03b7 \u03c3\u03c4\u03bf\u03bd \u03c4\u03bf\u03bc\u03ad\u03b1&nbsp;<\/span><span data-contrast=\"auto\">\u0388\u03c1\u03bd\u03c4\u03c7\u03b1\u03ca\u03bc-\u03a4\u03c3\u03ad\u03c3\u03c4\u03b5\u03c1<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">D<\/span><span data-contrast=\"auto\">\u0395\u03c6\u03cc\u03c3\u03bf\u03bd \u03b7 \u03bd\u03cc\u03c3\u03bf\u03c2 \u03b5\u03af\u03bd\u03b1\u03b9 \u03c0\u03b5\u03c1\u03b9\u03bf\u03c1\u03b9\u03c3\u03bc\u03ad\u03bd\u03b7, \u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b4\u03cd\u03c3\u03ba\u03bf\u03bb\u03bf \u03b3\u03b9\u03b1 \u03c4\u03bf\u03c5\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2 \u03bd\u03b1 \u03bb\u03ac\u03b2\u03bf\u03c5\u03bd \u03c4\u03b7\u03bd \u03ba\u03b1\u03b8\u03b9\u03b5\u03c1\u03c9\u03bc\u03ad\u03bd\u03b7 \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b1 \u03b1\u03c0\u03cc \u03b3\u03b9\u03b1\u03c4\u03c1\u03bf\u03cd\u03c2 \u03c4\u03b7\u03c2 \u03c0\u03b5\u03c1\u03b9\u03bf\u03c7\u03ae\u03c2 \u03c4\u03bf\u03c5\u03c2&nbsp;<\/span><span data-contrast=\"auto\">\u03b1\u03c3\u03c6\u03ac\u03bb\u03b9\u03c3\u03b7&nbsp;<\/span><span data-contrast=\"auto\">\u03b4\u03af\u03ba\u03c4\u03c5\u03bf.&nbsp;<\/span><span data-contrast=\"auto\">\u0393\u03b9\u03b1 \u03bf\u03c1\u03b9\u03c3\u03bc\u03ad\u03bd\u03bf\u03c5\u03c2, \u03b7 \u03ba\u03ac\u03bb\u03c5\u03c8\u03b7 \u03b9\u03c3\u03c7\u03cd\u03b5\u03b9 \u03bc\u03cc\u03bd\u03bf \u03b5\u03bd\u03c4\u03cc\u03c2 \u03c4\u03c9\u03bd \u03bf\u03c1\u03af\u03c9\u03bd \u03c4\u03b7\u03c2 \u03c0\u03bf\u03bb\u03b9\u03c4\u03b5\u03af\u03b1\u03c2<\/span><span data-contrast=\"auto\">. \u03a0\u03ad\u03c1\u03b1 \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd \u03ba\u03ac\u03bb\u03c5\u03c8\u03b7 \u03c4\u03c9\u03bd \u03b4\u03b1\u03c0\u03b1\u03bd\u03ce\u03bd \u03c0\u03b5\u03c1\u03af\u03b8\u03b1\u03bb\u03c8\u03b7\u03c2, \u03c0\u03bf\u03bb\u03bb\u03bf\u03af \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2 \u03b5\u03bd\u03b4\u03ad\u03c7\u03b5\u03c4\u03b1\u03b9 \u03bd\u03b1 \u03b1\u03bd\u03c4\u03b9\u03bc\u03b5\u03c4\u03c9\u03c0\u03af\u03b6\u03bf\u03c5\u03bd \u03bf\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae \u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7 \u03bb\u03cc\u03b3\u03c9 \u03c4\u03c9\u03bd \u03c3\u03c5\u03bd\u03c4\u03b1\u03b3\u03bf\u03b3\u03c1\u03b1\u03c6\u03bf\u03cd\u03bc\u03b5\u03bd\u03c9\u03bd \u03c6\u03b1\u03c1\u03bc\u03ac\u03ba\u03c9\u03bd.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">\u03a4\u03b1\u03be\u03af\u03b4\u03b9\u03b1&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">\u039a\u03cc\u03c3\u03c4\u03bf\u03c2&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">\u0392\u03ac\u03c1\u03bf\u03c2<\/span><\/b><\/p>\n<p><span data-contrast=\"auto\">\u0388\u03bd\u03b1 \u03ac\u03bb\u03bb\u03bf \u03ba\u03c1\u03c5\u03c6\u03cc \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2 \u03c4\u03c9\u03bd \u03c3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03b9\u03ce\u03bd \u03b5\u03af\u03bd\u03b1\u03b9&nbsp;<\/span><span data-contrast=\"auto\">\u03c4\u03b1\u03be\u03af\u03b4\u03b9\u03b1:<\/span><span data-contrast=\"auto\">&nbsp;\u039f\u03b9 \u03b5\u03c0\u03b9\u03c3\u03ba\u03ad\u03c8\u03b5\u03b9\u03c2 \u03c3\u03c4\u03bf\u03bd \u03b8\u03b5\u03c1\u03ac\u03c0\u03bf\u03bd\u03c4\u03b1 \u03b9\u03b1\u03c4\u03c1\u03cc, \u03c4\u03b1 \u03c1\u03b1\u03bd\u03c4\u03b5\u03b2\u03bf\u03cd \u03c3\u03b5 \u03b5\u03be\u03c9\u03c4\u03b5\u03c1\u03b9\u03ba\u03ac \u03b9\u03b1\u03c4\u03c1\u03b5\u03af\u03b1, \u03bf\u03b9 \u03b5\u03c0\u03b9\u03c3\u03ba\u03ad\u03c8\u03b5\u03b9\u03c2 \u03c3\u03c4\u03bf \u03c0\u03bb\u03b1\u03af\u03c3\u03b9\u03bf \u03ba\u03bb\u03b9\u03bd\u03b9\u03ba\u03ce\u03bd \u03b5\u03c1\u03b5\u03c5\u03bd\u03ce\u03bd \u03ba\u03b1\u03b9 \u03bf\u03b9 \u03bd\u03bf\u03c3\u03b7\u03bb\u03b5\u03af\u03b5\u03c2 \u03c3\u03c4\u03bf \u03bd\u03bf\u03c3\u03bf\u03ba\u03bf\u03bc\u03b5\u03af\u03bf \u03ad\u03c7\u03bf\u03c5\u03bd \u03cc\u03bb\u03b5\u03c2 \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2. \u03a3\u03c7\u03b5\u03b4\u03cc\u03bd \u03ba\u03ac\u03b8\u03b5 \u03ac\u03c4\u03bf\u03bc\u03bf \u03c0\u03bf\u03c5 \u03c0\u03ac\u03c3\u03c7\u03b5\u03b9 \u03b1\u03c0\u03cc \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1 \u03b5\u03bd\u03b4\u03ad\u03c7\u03b5\u03c4\u03b1\u03b9 \u03bd\u03b1 \u03b5\u03c0\u03b9\u03b2\u03b1\u03c1\u03c5\u03bd\u03b8\u03b5\u03af \u03bc\u03b5 \u03ad\u03be\u03bf\u03b4\u03b1 \u03bc\u03b5\u03c4\u03b1\u03ba\u03af\u03bd\u03b7\u03c3\u03b7\u03c2\u00b7 \u03b3\u03b9\u03b1 \u03c0\u03b1\u03c1\u03ac\u03b4\u03b5\u03b9\u03b3\u03bc\u03b1, \u03cc\u03c4\u03b1\u03bd \u03b5\u03c0\u03b9\u03c3\u03ba\u03ad\u03c0\u03c4\u03b5\u03c4\u03b1\u03b9 \u03b5\u03be\u03b5\u03b9\u03b4\u03b9\u03ba\u03b5\u03c5\u03bc\u03ad\u03bd\u03b1 \u03ba\u03ad\u03bd\u03c4\u03c1\u03b1 \u03bc\u03b1\u03ba\u03c1\u03b9\u03ac \u03b1\u03c0\u03cc \u03c4\u03bf\u03bd \u03c4\u03cc\u03c0\u03bf \u03b4\u03b9\u03b1\u03bc\u03bf\u03bd\u03ae\u03c2 \u03c4\u03bf\u03c5 \u03ae \u03b5\u03c0\u03b5\u03b9\u03b4\u03ae \u03c4\u03b1 \u03c3\u03c5\u03bc\u03c0\u03c4\u03ce\u03bc\u03b1\u03c4\u03b1 \u03c4\u03b7\u03c2 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1\u03c2 \u03c0\u03b5\u03c1\u03b9\u03bf\u03c1\u03af\u03b6\u03bf\u03c5\u03bd \u03c4\u03b7\u03bd \u03ba\u03b1\u03b8\u03b7\u03bc\u03b5\u03c1\u03b9\u03bd\u03ae \u03c4\u03bf\u03c5 \u03ba\u03b9\u03bd\u03b7\u03c4\u03b9\u03ba\u03cc\u03c4\u03b7\u03c4\u03b1.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-ccp-props=\"{}\">&nbsp;<\/span><b><i><span data-contrast=\"auto\">\u039f\u03c1\u03b3\u03b1\u03bd\u03b9\u03c3\u03bc\u03bf\u03af \u03c0\u03bf\u03c5 \u03c0\u03b1\u03c1\u03ad\u03c7\u03bf\u03c5\u03bd \u03b2\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1 \u03c3\u03b5 \u03ac\u03c4\u03bf\u03bc\u03b1 \u03bc\u03b5 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03c0\u03b1\u03b8\u03ae\u03c3\u03b5\u03b9\u03c2:<\/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\">: \u03a0\u03b1\u03c1\u03ad\u03c7\u03b5\u03b9 \u03bf\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7 \u03ba\u03b1\u03b9 \u03ba\u03b1\u03b8\u03bf\u03b4\u03ae\u03b3\u03b7\u03c3\u03b7 \u03c3\u03b5 \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2 \u03bc\u03b5 \u03c3\u03c5\u03b3\u03ba\u03b5\u03ba\u03c1\u03b9\u03bc\u03ad\u03bd\u03b5\u03c2, \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;\u03bf\u03b9 \u03c7\u03c1\u03cc\u03bd\u03b9\u03b5\u03c2 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03c3\u03c4\u03b9\u03c2 \u0397\u03a0\u0391. \u0395\u03c0\u03af\u03c3\u03b7\u03c2, \u03b4\u03b9\u03b1\u03c4\u03af\u03b8\u03b5\u03bd\u03c4\u03b1\u03b9 \u03b4\u03c9\u03c1\u03b5\u03ac\u03bd \u03b4\u03b9\u03ac\u03c6\u03bf\u03c1\u03b5\u03c2 \u03bd\u03bf\u03bc\u03b9\u03ba\u03ad\u03c2 \u03c5\u03c0\u03b7\u03c1\u03b5\u03c3\u03af\u03b5\u03c2<\/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;\u03a0\u03c1\u03cc\u03b3\u03c1\u03b1\u03bc\u03bc\u03b1 \u00abRare Giving\u00bb \u03c4\u03bf\u03c5 \u0399\u03b4\u03c1\u03cd\u03bc\u03b1\u03c4\u03bf\u03c2<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">\u03a4\u03bf \u00abRare Giving\u00bb \u03b5\u03af\u03bd\u03b1\u03b9 \u03ad\u03bd\u03b1 \u03c0\u03c1\u03cc\u03b3\u03c1\u03b1\u03bc\u03bc\u03b1 \u03c4\u03bf\u03c5&nbsp;<\/span><span data-contrast=\"auto\">EveryLife<\/span><span data-contrast=\"auto\">&nbsp;\u038a\u03b4\u03c1\u03c5\u03bc\u03b1 \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03a3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u0391\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2, \u03bc\u03b5 \u03c3\u03ba\u03bf\u03c0\u03cc \u03c4\u03b7\u03bd \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7 \u03c4\u03cc\u03c3\u03bf \u03bc\u03b5\u03bc\u03bf\u03bd\u03c9\u03bc\u03ad\u03bd\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b5\u03c2 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03cc\u03c3\u03bf \u03ba\u03b1\u03b9 \u03bf\u03c1\u03b3\u03b1\u03bd\u03ce\u03c3\u03b5\u03c9\u03bd \u03c0\u03bf\u03c5 \u03c0\u03c1\u03bf\u03c9\u03b8\u03bf\u03cd\u03bd \u03c4\u03b7 \u03c3\u03c5\u03bd\u03b5\u03c1\u03b3\u03b1\u03c3\u03af\u03b1 \u03c3\u03c4\u03bf\u03bd \u03c4\u03bf\u03bc\u03ad\u03b1 \u03c4\u03c9\u03bd \u03c3\u03c0\u03ac\u03bd\u03b9\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03b9\u03ce\u03bd \u03ba\u03b1\u03b9 \u03b5\u03bc\u03c0\u03bb\u03ad\u03ba\u03bf\u03c5\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2, \u03b5\u03c1\u03b5\u03c5\u03bd\u03b7\u03c4\u03ad\u03c2 \u03ba\u03b1\u03b9 \u03ac\u03bb\u03bb\u03b1 \u03bc\u03ad\u03bb\u03b7 \u03c4\u03b7\u03c2 \u03ba\u03bf\u03b9\u03bd\u03cc\u03c4\u03b7\u03c4\u03b1\u03c2 \u03c3\u03c4\u03b7 \u03b4\u03b9\u03b1\u03bc\u03cc\u03c1\u03c6\u03c9\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03b4\u03b7\u03bc\u03cc\u03c3\u03b9\u03b1\u03c2 \u03c0\u03bf\u03bb\u03b9\u03c4\u03b9\u03ba\u03ae\u03c2<\/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\">\u03a0\u03c1\u03cc\u03b3\u03c1\u03b1\u03bc\u03bc\u03b1 \u0392\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1\u03c2 \u0391\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03c4\u03b7\u03c2 NORD (<\/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\">\u0391\u03c0\u03cc \u03c4\u03bf 1987, \u03b7 NORD \u03c0\u03c1\u03bf\u03c3\u03c6\u03ad\u03c1\u03b5\u03b9 \u03c0\u03c1\u03bf\u03b3\u03c1\u03ac\u03bc\u03bc\u03b1\u03c4\u03b1 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7\u03c2 \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03b2\u03bf\u03b7\u03b8\u03ae\u03c3\u03b5\u03b9 \u03c4\u03bf\u03c5\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2 \u03bd\u03b1 \u03b1\u03c0\u03bf\u03ba\u03c4\u03ae\u03c3\u03bf\u03c5\u03bd&nbsp;<\/span><span data-contrast=\"auto\">\u03c0\u03bf\u03c5 \u03c3\u03ce\u03b6\u03b5\u03b9 \u03b6\u03c9\u03ad\u03c2<\/span><span data-contrast=\"auto\">&nbsp;\u03ae \u03c6\u03ac\u03c1\u03bc\u03b1\u03ba\u03b1 \u03b6\u03c9\u03c4\u03b9\u03ba\u03ae\u03c2 \u03c3\u03b7\u03bc\u03b1\u03c3\u03af\u03b1\u03c2 \u03c0\u03bf\u03c5 \u03b4\u03b9\u03b1\u03c6\u03bf\u03c1\u03b5\u03c4\u03b9\u03ba\u03ac \u03b4\u03b5\u03bd \u03b8\u03b1 \u03bc\u03c0\u03bf\u03c1\u03bf\u03cd\u03c3\u03b1\u03bd \u03bd\u03b1 \u03b1\u03b3\u03bf\u03c1\u03ac\u03c3\u03bf\u03c5\u03bd. \u03a4\u03b1 \u03c0\u03c1\u03bf\u03b3\u03c1\u03ac\u03bc\u03bc\u03b1\u03c4\u03b1 \u03b1\u03c5\u03c4\u03ac \u03c0\u03b1\u03c1\u03ad\u03c7\u03bf\u03c5\u03bd \u03c6\u03ac\u03c1\u03bc\u03b1\u03ba\u03b1, \u03bf\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae \u03b2\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1 \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u03ba\u03ac\u03bb\u03c5\u03c8\u03b7 \u03c4\u03c9\u03bd \u03b1\u03c3\u03c6\u03b1\u03bb\u03af\u03c3\u03c4\u03c1\u03c9\u03bd \u03ba\u03b1\u03b9 \u03c4\u03c9\u03bd \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03bf\u03c7\u03ce\u03bd, \u03b2\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1 \u03b3\u03b9\u03b1 \u03b4\u03b9\u03b1\u03b3\u03bd\u03c9\u03c3\u03c4\u03b9\u03ba\u03ad\u03c2 \u03b5\u03be\u03b5\u03c4\u03ac\u03c3\u03b5\u03b9\u03c2, \u03ba\u03b1\u03b8\u03ce\u03c2 \u03ba\u03b1\u03b9 \u03b2\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1 \u03b3\u03b9\u03b1 \u03bc\u03b5\u03c4\u03b1\u03ba\u03b9\u03bd\u03ae\u03c3\u03b5\u03b9\u03c2 \u03bc\u03b5 \u03c3\u03ba\u03bf\u03c0\u03cc \u03c4\u03b7 \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03bf\u03c7\u03ae \u03c3\u03b5 \u03ba\u03bb\u03b9\u03bd\u03b9\u03ba\u03ad\u03c2 \u03b4\u03bf\u03ba\u03b9\u03bc\u03ad\u03c2 \u03ae \u03c4\u03b7 \u03b4\u03b9\u03b1\u03b2\u03bf\u03cd\u03bb\u03b5\u03c5\u03c3\u03b7 \u03bc\u03b5 \u03b5\u03b9\u03b4\u03b9\u03ba\u03bf\u03cd\u03c2 \u03b3\u03b9\u03b1 \u03c4\u03b7 \u03c3\u03c5\u03b3\u03ba\u03b5\u03ba\u03c1\u03b9\u03bc\u03ad\u03bd\u03b7 \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1.<\/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\">\u0394\u03af\u03ba\u03c4\u03c5\u03bf \u0391\u03b5\u03c1\u03bf\u03c0\u03bf\u03c1\u03b9\u03ba\u03ce\u03bd \u03a6\u03b9\u03bb\u03b1\u03bd\u03b8\u03c1\u03c9\u03c0\u03b9\u03ba\u03ce\u03bd \u039f\u03c1\u03b3\u03b1\u03bd\u03ce\u03c3\u03b5\u03c9\u03bd (Angel Flight)<\/span><\/i><i><span data-contrast=\"auto\">:<\/span><\/i><i><span data-contrast=\"auto\">&nbsp;<\/span><\/i><span data-contrast=\"auto\">\u03a4\u03bf Air Charity Network \u03b5\u03af\u03bd\u03b1\u03b9 \u03ad\u03bd\u03b1\u03c2 \u03c6\u03b9\u03bb\u03b1\u03bd\u03b8\u03c1\u03c9\u03c0\u03b9\u03ba\u03cc\u03c2 \u03bf\u03c1\u03b3\u03b1\u03bd\u03b9\u03c3\u03bc\u03cc\u03c2 \u03c0\u03bf\u03c5 \u03c0\u03b1\u03c1\u03ad\u03c7\u03b5\u03b9 \u03c0\u03c1\u03cc\u03c3\u03b2\u03b1\u03c3\u03b7 \u03c3\u03b5 \u03ac\u03c4\u03bf\u03bc\u03b1 \u03c0\u03bf\u03c5 \u03b2\u03c1\u03af\u03c3\u03ba\u03bf\u03bd\u03c4\u03b1\u03b9 \u03c3\u03b5 \u03b1\u03bd\u03ac\u03b3\u03ba\u03b7 \u03ba\u03b1\u03b9 \u03b1\u03bd\u03b1\u03b6\u03b7\u03c4\u03bf\u03cd\u03bd \u03b4\u03c9\u03c1\u03b5\u03ac\u03bd \u03b1\u03b5\u03c1\u03bf\u03c0\u03bf\u03c1\u03b9\u03ba\u03ae \u03bc\u03b5\u03c4\u03b1\u03c6\u03bf\u03c1\u03ac \u03c0\u03c1\u03bf\u03c2 \u03b5\u03be\u03b5\u03b9\u03b4\u03b9\u03ba\u03b5\u03c5\u03bc\u03ad\u03bd\u03b1 \u03ba\u03ad\u03bd\u03c4\u03c1\u03b1 \u03c5\u03b3\u03b5\u03b9\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae\u03c2 \u03c0\u03b5\u03c1\u03af\u03b8\u03b1\u03bb\u03c8\u03b7\u03c2 \u03ae \u03b1\u03c0\u03bf\u03bc\u03b1\u03ba\u03c1\u03c5\u03c3\u03bc\u03ad\u03bd\u03bf\u03c5\u03c2 \u03c0\u03c1\u03bf\u03bf\u03c1\u03b9\u03c3\u03bc\u03bf\u03cd\u03c2, \u03bb\u03cc\u03b3\u03c9 \u03bf\u03b9\u03ba\u03bf\u03b3\u03b5\u03bd\u03b5\u03b9\u03b1\u03ba\u03ae\u03c2, \u03ba\u03bf\u03b9\u03bd\u03bf\u03c4\u03b9\u03ba\u03ae\u03c2 \u03ae \u03b5\u03b8\u03bd\u03b9\u03ba\u03ae\u03c2 \u03ba\u03c1\u03af\u03c3\u03b7\u03c2.<\/span><span data-contrast=\"auto\">&nbsp;Ange<\/span><span data-contrast=\"auto\">l<\/span><span data-contrast=\"auto\">&nbsp;\u0397 Flight \u03b8\u03b1 \u03b1\u03bd\u03b1\u03bb\u03ac\u03b2\u03b5\u03b9 \u03b5\u03c0\u03af\u03c3\u03b7\u03c2 \u03c4\u03bf\u03bd \u03c3\u03c5\u03bd\u03c4\u03bf\u03bd\u03b9\u03c3\u03bc\u03cc \u03b3\u03b9\u03b1 \u03cc\u03c3\u03bf\u03c5\u03c2 \u03c4\u03b1\u03be\u03b9\u03b4\u03b5\u03cd\u03bf\u03c5\u03bd \u03b3\u03b9\u03b1 \u03ba\u03bb\u03b9\u03bd\u03b9\u03ba\u03ad\u03c2 \u03b4\u03bf\u03ba\u03b9\u03bc\u03ad\u03c2.&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\">\u03a3\u03cd\u03bc\u03c0\u03c1\u03b1\u03be\u03b7 \u03b3\u03b9\u03b1 \u03c4\u03b7 \u03a3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7 \u03c3\u03c4\u03b7 \u03a7\u03bf\u03c1\u03ae\u03b3\u03b7\u03c3\u03b7 \u03a3\u03c5\u03bd\u03c4\u03b1\u03b3\u03ce\u03bd (PPA)<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">\u039f\u03b9 \u03b1\u03bc\u03b5\u03c1\u03b9\u03ba\u03b1\u03bd\u03b9\u03ba\u03ad\u03c2 \u03b5\u03c4\u03b1\u03b9\u03c1\u03b5\u03af\u03b5\u03c2 \u03b2\u03b9\u03bf\u03c6\u03b1\u03c1\u03bc\u03b1\u03ba\u03b5\u03c5\u03c4\u03b9\u03ba\u03ae\u03c2 \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1\u03c2 \u03ad\u03c7\u03bf\u03c5\u03bd \u03c9\u03c2 \u03b1\u03c0\u03bf\u03c3\u03c4\u03bf\u03bb\u03ae \u03c4\u03b7 \u03b2\u03b5\u03bb\u03c4\u03af\u03c9\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2 \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd, \u03c4\u03b7\u03bd \u03c0\u03c1\u03bf\u03ce\u03b8\u03b7\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03ae\u03c2 \u03ba\u03b1\u03b9\u03bd\u03bf\u03c4\u03bf\u03bc\u03af\u03b1\u03c2 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03bd \u03c4\u03cc\u03bd\u03c9\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03bf\u03b9\u03ba\u03bf\u03bd\u03bf\u03bc\u03b9\u03ba\u03ae\u03c2 \u03b1\u03bd\u03ac\u03c0\u03c4\u03c5\u03be\u03b7\u03c2. \u03a4\u03b1 \u03c6\u03ac\u03c1\u03bc\u03b1\u03ba\u03b1 \u03c0\u03bf\u03c5 \u03b4\u03b7\u03bc\u03b9\u03bf\u03c5\u03c1\u03b3\u03bf\u03cd\u03bd \u03c0\u03c1\u03bf\u03c3\u03c6\u03ad\u03c1\u03bf\u03c5\u03bd \u03c4\u03b7\u03bd \u03b5\u03bb\u03c0\u03af\u03b4\u03b1 \u03cc\u03c4\u03b9 \u03b8\u03b1 \u03b2\u03c1\u03b5\u03b8\u03b5\u03af \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b1, \u03cc\u03c4\u03b9 \u03b7 \u03b1\u03b3\u03c9\u03b3\u03ae \u03b8\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b1\u03c0\u03bf\u03c4\u03b5\u03bb\u03b5\u03c3\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u03ba\u03b1\u03b9 \u03cc\u03c4\u03b9 \u03b7 \u03b6\u03c9\u03ae \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1&nbsp;<\/span><span data-contrast=\"auto\">\u03b2\u03b5\u03bb\u03c4\u03b9\u03ce\u03b8\u03b7\u03ba\u03b5<\/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\">\u039f\u03b9\u03ba\u03bf\u03b3\u03b5\u03bd\u03b5\u03b9\u03b1\u03ba\u03cc \u039a\u03b1\u03c4\u03b1\u03c6\u03cd\u03b3\u03b9\u03bf \u03c4\u03bf\u03c5 \u0395\u03b8\u03bd\u03b9\u03ba\u03bf\u03cd \u0399\u03bd\u03c3\u03c4\u03b9\u03c4\u03bf\u03cd\u03c4\u03bf\u03c5 \u03a5\u03b3\u03b5\u03af\u03b1\u03c2<\/span><i><span data-contrast=\"auto\">:&nbsp;<\/span><\/i><span data-contrast=\"auto\">\u0388\u03bd\u03b1 \u03c6\u03b9\u03bb\u03cc\u03be\u03b5\u03bd\u03bf \u03ba\u03b1\u03c4\u03b1\u03c6\u03cd\u03b3\u03b9\u03bf \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03ba\u03b1\u03b9 \u03c4\u03bf\u03c5\u03c2 \u03bf\u03b9\u03ba\u03b5\u03af\u03bf\u03c5\u03c2 \u03c4\u03c9\u03bd \u03b5\u03bd\u03ae\u03bb\u03b9\u03ba\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03c0\u03bf\u03c5 \u03bb\u03b1\u03bc\u03b2\u03ac\u03bd\u03bf\u03c5\u03bd \u03c0\u03b5\u03c1\u03af\u03b8\u03b1\u03bb\u03c8\u03b7 \u03c3\u03c4\u03bf<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">\u039a\u03bb\u03b9\u03bd\u03b9\u03ba\u03cc \u039a\u03ad\u03bd\u03c4\u03c1\u03bf \u03c4\u03bf\u03c5 NIH (\u03bc\u03b5 \u03ad\u03b4\u03c1\u03b1 \u03c4\u03b7 \u039c\u03c0\u03b5\u03b8\u03ad\u03c3\u03bd\u03c4\u03b1 \u03c4\u03bf\u03c5 \u039c\u03ad\u03c1\u03b9\u03bb\u03b1\u03bd\u03c4)<\/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\">\u03a4\u03bf \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2 \u03bc\u03b9\u03b1\u03c2 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1\u03c2 \u03bd\u03cc\u03c3\u03bf\u03c5 \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2&nbsp;<\/span><span data-contrast=\"auto\">\u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9<\/span><span data-contrast=\"auto\">&nbsp;\u03c5\u03c8\u03b7\u03bb\u03cc, \u03b1\u03bb\u03bb\u03ac \u03c5\u03c0\u03ac\u03c1\u03c7\u03bf\u03c5\u03bd \u03c0\u03bf\u03bb\u03bb\u03ac \u03c3\u03c4\u03bf\u03b9\u03c7\u03b5\u03af\u03b1 \u03c0\u03bf\u03c5 \u03c4\u03bf \u03c5\u03c0\u03bf\u03c3\u03c4\u03b7\u03c1\u03af\u03b6\u03bf\u03c5\u03bd&nbsp;<\/span><span data-contrast=\"auto\">\u03c0\u03c1\u03bf\u03b3\u03c1\u03ac\u03bc\u03bc\u03b1\u03c4\u03b1<\/span><span data-contrast=\"auto\">&nbsp;\u03b4\u03b9\u03b1\u03b8\u03ad\u03c3\u03b9\u03bc\u03bf<\/span><span data-contrast=\"auto\">le<\/span><span data-contrast=\"auto\">, \u03b5\u03b9\u03b4\u03b9\u03ba\u03ac \u03c3\u03c4\u03b9\u03c2 \u0397\u03a0\u0391<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;\u03cc\u03c0\u03bf\u03c5 \u03c4\u03b1 \u03ad\u03be\u03bf\u03b4\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b9\u03b4\u03b9\u03b1\u03af\u03c4\u03b5\u03c1\u03b1 \u03c5\u03c8\u03b7\u03bb\u03ac<\/span><span data-contrast=\"auto\">. \u0388\u03c7\u03b5\u03c4\u03b5 \u03c0\u03b5\u03c4\u03cd\u03c7\u03b5\u03b9 \u03bc\u03b5<\/span><span data-contrast=\"auto\">&nbsp;\u03a0\u03bf\u03b9\u03b5\u03c2 \u03b5\u03af\u03bd\u03b1\u03b9 \u03bf\u03b9 \u03b4\u03b9\u03b1\u03b8\u03ad\u03c3\u03b9\u03bc\u03b5\u03c2 \u03c5\u03c0\u03b7\u03c1\u03b5\u03c3\u03af\u03b5\u03c2;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u039f \u03c0\u03b1\u03c1\u03b1\u03ba\u03ac\u03c4\u03c9 \u03c3\u03cd\u03bd\u03b4\u03b5\u03c3\u03bc\u03bf\u03c2 \u03b1\u03c0\u03bf\u03c4\u03b5\u03bb\u03b5\u03af \u03bc\u03b9\u03b1 \u03b5\u03be\u03b1\u03b9\u03c1\u03b5\u03c4\u03b9\u03ba\u03ae \u03c0\u03b7\u03b3\u03ae \u03c0\u03bb\u03b7\u03c1\u03bf\u03c6\u03bf\u03c1\u03b9\u03ce\u03bd, \u03ba\u03b1\u03b8\u03ce\u03c2 \u03c3\u03c5\u03b3\u03ba\u03b5\u03bd\u03c4\u03c1\u03ce\u03bd\u03b5\u03b9 \u03c3\u03b5 \u03ad\u03bd\u03b1 \u03bc\u03ad\u03c1\u03bf\u03c2 \u03c0\u03bf\u03bb\u03bb\u03ac \u03b1\u03c0\u03cc \u03c4\u03b1 \u03c0\u03c1\u03bf\u03b3\u03c1\u03ac\u03bc\u03bc\u03b1\u03c4\u03b1 \u03c0\u03bf\u03c5 \u03b1\u03bd\u03b1\u03c6\u03ad\u03c1\u03b8\u03b7\u03ba\u03b1\u03bd \u03c0\u03b1\u03c1\u03b1\u03c0\u03ac\u03bd\u03c9.&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\/el\/wp-json\/wp\/v2\/posts\/13060","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=13060"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/13060\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/13061"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=13060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=13060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=13060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}