{"id":21390,"date":"2025-06-23T18:30:19","date_gmt":"2025-06-23T18:30:19","guid":{"rendered":"https:\/\/lpfch.org\/?p=21390"},"modified":"2025-07-15T23:19:55","modified_gmt":"2025-07-15T23:19:55","slug":"donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease","status":"publish","type":"post","link":"https:\/\/lpfch.org\/vi\/impact-stories\/donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease\/","title":{"rendered":"S\u1ef1 h\u1ed7 tr\u1ee3 c\u1ee7a nh\u00e0 t\u00e0i tr\u1ee3 th\u00fac \u0111\u1ea9y ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb m\u1edbi cho EB, m\u1ed9t b\u1ec7nh ngo\u00e0i da hi\u1ebfm g\u1eb7p v\u00e0 \u0111au \u0111\u1edbn"},"content":{"rendered":"<p><span data-contrast=\"none\">C\u00e1c gia \u0111\u00ecnh \u0111ang s\u1ed1ng chung v\u1edbi m\u1ed9t trong nh\u1eefng b\u1ec7nh l\u00fd da li\u1ec5u nghi\u00eam tr\u1ecdng nh\u1ea5t hi\u1ec7n nay c\u00f3 th\u00eam l\u00fd do \u0111\u1ec3 hy v\u1ecdng. G\u1ea7n \u0111\u00e2y, m\u1ed9t th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng giai \u0111o\u1ea1n 3 \u0111\u00e3 cho th\u1ea5y li\u1ec7u ph\u00e1p gen gh\u00e9p da \u0111\u00e3 gi\u00fap \u00edch \u0111\u00e1ng k\u1ec3 cho b\u1ec7nh nh\u00e2n m\u1eafc b\u1ec7nh ly th\u01b0\u1ee3ng b\u00ec b\u00f3ng n\u01b0\u1edbc (EB). K\u1ebft qu\u1ea3, <\/span><a href=\"https:\/\/med.stanford.edu\/news\/all-news\/2025\/06\/epidermolysis-bullosa.html\"><span data-contrast=\"none\">\u0111\u01b0\u1ee3c xu\u1ea5t b\u1ea3n trong <\/span><i><span data-contrast=\"none\">T\u1ea1p ch\u00ed Lancet<\/span><\/i><\/a><span data-contrast=\"none\">, cho th\u1ea5y vai tr\u00f2 quan tr\u1ecdng c\u1ee7a c\u00e1c nh\u00e0 nghi\u00ean c\u1ee9u t\u1ea1i Tr\u01b0\u1eddng Y Stanford trong vi\u1ec7c ph\u00e1t tri\u1ec3n ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb m\u1edbi.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">S\u1ef1 n\u00e2ng cao nh\u1eadn th\u1ee9c c\u1ee7a c\u00f4ng ch\u00fang v\u00e0 s\u1ef1 h\u1ed7 tr\u1ee3 h\u00e0o ph\u00f3ng c\u1ee7a c\u00e1c nh\u00e0 t\u00e0i tr\u1ee3 c\u0169ng \u0111\u00f3ng vai tr\u00f2 quan tr\u1ecdng trong vi\u1ec7c th\u00fac \u0111\u1ea9y b\u01b0\u1edbc \u0111\u1ed9t ph\u00e1 n\u00e0y. <\/span><span data-contrast=\"none\">l\u00e0 Jean Y. Tang, Ti\u1ebfn s\u0129, Gi\u00e1o s\u01b0 Da li\u1ec5u, chuy\u00ean \u0111i\u1ec1u tr\u1ecb tr\u1ebb em m\u1eafc EB t\u1ea1i B\u1ec7nh vi\u1ec7n Nhi \u0111\u1ed3ng Lucile Packard Stanford. C\u00e1c m\u1ea3nh gh\u00e9p da \u0111\u00e3 \u0111\u01b0\u1ee3c C\u1ee5c Qu\u1ea3n l\u00fd Th\u1ef1c ph\u1ea9m v\u00e0 D\u01b0\u1ee3c ph\u1ea9m Hoa K\u1ef3 (FDA) ph\u00ea duy\u1ec7t v\u00e0o ng\u00e0y 29 th\u00e1ng 4. Ch\u00fang s\u1ebd \u0111\u01b0\u1ee3c s\u1eed d\u1ee5ng t\u1ea1i n\u0103m b\u1ec7nh vi\u1ec7n tr\u00ean kh\u1eafp c\u1ea3 n\u01b0\u1edbc, bao g\u1ed3m B\u1ec7nh vi\u1ec7n Nhi \u0111\u1ed3ng Packard, n\u01a1i Ti\u1ebfn s\u0129, B\u00e1c s\u0129 Joyce Teng, Gi\u00e1o s\u01b0 Da li\u1ec5u, s\u1ebd h\u1ee3p t\u00e1c v\u1ec1 vi\u1ec7c s\u1eed d\u1ee5ng ch\u00fang v\u1edbi c\u00e1c b\u00e1c s\u0129 ph\u1eabu thu\u1eadt v\u00e0 b\u00e1c s\u0129 g\u00e2y m\u00ea: Ti\u1ebfn s\u0129 H. Peter Lorenz, Ti\u1ebfn s\u0129 Rohit Khosla, FACS v\u00e0 Louise Furakawa.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Tang cho bi\u1ebft: \u201cHo\u1ea1t \u0111\u1ed9ng t\u1eeb thi\u1ec7n \u0111\u00e3 \u0111\u00f3ng vai tr\u00f2 quan tr\u1ecdng trong vi\u1ec7c th\u00fac \u0111\u1ea9y nghi\u00ean c\u1ee9u t\u1ea1i Stanford h\u01b0\u1edbng t\u1edbi c\u00e1c li\u1ec7u ph\u00e1p m\u1edbi \u0111\u1ec3 \u0111i\u1ec1u tr\u1ecb EB\u201d.<\/span><span data-contrast=\"none\"> ng\u01b0\u1eddi \u0111\u1ed3ng t\u00e1c gi\u1ea3 nghi\u00ean c\u1ee9u<\/span><span data-contrast=\"none\">\u201cK\u1ec3 t\u1eeb khi t\u00f4i b\u1eaft \u0111\u1ea7u nghi\u00ean c\u1ee9u trong l\u0129nh v\u1ef1c n\u00e0y 10 n\u0103m tr\u01b0\u1edbc, ch\u00fang t\u00f4i \u0111\u00e3 h\u1ecdc \u0111\u01b0\u1ee3c r\u1ea5t nhi\u1ec1u \u0111i\u1ec1u v\u1ec1 c\u0103n b\u1ec7nh n\u00e0y v\u00e0 hi\u1ec7n \u0111\u00e3 c\u00f3 m\u1ed9t li\u1ec7u ph\u00e1p m\u1edbi \u0111\u1ea7y h\u1ee9a h\u1eb9n \u0111\u01b0\u1ee3c FDA ch\u1ea5p thu\u1eadn. Ch\u00fang t\u00f4i s\u1ebd ti\u1ebfp t\u1ee5c n\u1ed7 l\u1ef1c \u0111\u1ec3 \u0111\u1ea9y nhanh qu\u00e1 tr\u00ecnh \u0111i\u1ec1u tr\u1ecb v\u00e0 cu\u1ed1i c\u00f9ng s\u1ebd t\u00ecm ra ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb.\u201d\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<section class=\"component component-cta impact-story-cta full-width-cta  no-image scheme-red\" >\n  <div class=\"module-container\">\n    <div class=\"component-cta-container\">\n      <div class=\"component-cta-wrapper\">\n        <h2 class=\"component-cta-title\">\n          &quot;S\u1ef1 h\u1ed7 tr\u1ee3 c\u1ee7a nh\u00e0 t\u00e0i tr\u1ee3 l\u00e0 r\u1ea5t quan tr\u1ecdng...&quot;\n        <\/h2>\n\n                  <p class=\"component-cta-description\">\n            C\u1ed9ng \u0111\u1ed3ng t\u00e0i tr\u1ee3 c\u1ee7a ch\u00fang t\u00f4i hi\u1ec7n th\u1ef1c h\u00f3a nh\u1eefng \u0111\u1ed9t ph\u00e1 nh\u01b0 th\u1ebf n\u00e0y. Th\u00fac \u0111\u1ea9y nh\u1eefng \u0111\u1ed5i m\u1edbi ti\u1ebfp theo trong l\u0129nh v\u1ef1c s\u1ee9c kh\u1ecfe tr\u1ebb em.\n          <\/p>\n        \n        <div class=\"component-cta-buttons\">\n                                    <a href=\"https:\/\/lpfch.org\/donate\/\"\n       class=\"component-cta-button btn btn-white\"      title=\"Cho ngay b\u00e2y gi\u1edd\" >\n      Cho ngay b\u00e2y gi\u1edd\n  \n  <\/a>\n                        \n                              <\/div>\n      <\/div>\n\n          <\/div>\n  <\/div>\n<\/section>\n\n<p><span data-contrast=\"none\">C\u00f3 t\u1edbi 5.000 ng\u01b0\u1eddi \u1edf Hoa K\u1ef3 m\u1eafc EB\u2014h\u1ea7u h\u1ebft l\u00e0 tr\u1ebb em do tu\u1ed5i th\u1ecd gi\u1ea3m li\u00ean quan \u0111\u1ebfn c\u0103n b\u1ec7nh n\u00e0y. T\u00ecnh tr\u1ea1ng n\u00e0y l\u00e0 do khi\u1ebfm khuy\u1ebft trong gen s\u1ea3n xu\u1ea5t collagen VII, m\u1ed9t lo\u1ea1i protein thi\u1ebft y\u1ebfu gi\u00fap neo gi\u1eef l\u1edbp tr\u00ean v\u00e0 l\u1edbp d\u01b0\u1edbi c\u1ee7a da. B\u1ec7nh nh\u00e2n m\u1eafc EB n\u1eb7ng c\u00f3 l\u00e0n da nh\u1ea1y c\u1ea3m \u0111\u1ebfn m\u1ee9c ch\u1ec9 c\u1ea7n ch\u1ea1m nh\u1eb9 c\u0169ng c\u00f3 th\u1ec3 d\u1eabn \u0111\u1ebfn ph\u1ed3ng r\u1ed9p v\u00e0 cu\u1ed1i c\u00f9ng l\u00e0 nh\u1eefng v\u1ebft th\u01b0\u01a1ng h\u1edf l\u1edbn kh\u00f4ng bao gi\u1edd l\u00e0nh, g\u00e2y \u0111au \u0111\u1edbn t\u1ed9t c\u00f9ng.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Charlotte Brown, 20 tu\u1ed5i, \u0111\u1ebfn t\u1eeb Birmingham, Alabama, c\u1ea3m th\u1ea5y \u00edt \u0111au \u0111\u1edbn h\u01a1n nhi\u1ec1u do EB so v\u1edbi tr\u01b0\u1edbc khi c\u00f4 tham gia th\u1eed nghi\u1ec7m giai \u0111o\u1ea1n 3 v\u00e0o n\u0103m 2021. C\u00e1c m\u1ea3nh gh\u00e9p \u0111\u01b0\u1ee3c bi\u1ebfn \u0111\u1ed5i gen m\u00e0 c\u00f4 nh\u1eadn \u0111\u01b0\u1ee3c trong th\u1eed nghi\u1ec7m \u0111\u00e3 l\u00e0m gi\u1ea3m \u0111\u00e1ng k\u1ec3 m\u1ee9c \u0111\u1ed9 nghi\u00eam tr\u1ecdng c\u1ee7a m\u1ed9t s\u1ed1 v\u1ebft th\u01b0\u01a1ng m\u00e3n t\u00ednh. C\u00f4 th\u1eadm ch\u00ed c\u00f2n c\u00f3 th\u1ec3 gi\u1eef \u0111\u01b0\u1ee3c c\u00f4ng vi\u1ec7c m\u00e0 c\u00f4 y\u00eau th\u00edch - k\u1ef9 thu\u1eadt vi\u00ean d\u01b0\u1ee3c ph\u1ea9m.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u201cTh\u00e0nh th\u1eadt m\u00e0 n\u00f3i, n\u00f3 \u0111\u00e3 thay \u0111\u1ed5i cu\u1ed9c \u0111\u1eddi t\u00f4i,\u201d Brown n\u00f3i. \u201cT\u00f4i c\u1ea3m th\u1ea5y t\u1ed1t h\u01a1n r\u1ea5t nhi\u1ec1u.\u201d<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Brown l\u00e0 m\u1ed9t trong 11 ng\u01b0\u1eddi tham gia nghi\u00ean c\u1ee9u, h\u1ea7u h\u1ebft trong s\u1ed1 h\u1ecd \u0111\u01b0\u1ee3c ti\u00eam li\u1ec7u ph\u00e1p gen v\u00e0o nhi\u1ec1u v\u1ecb tr\u00ed tr\u00ean da.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb m\u1edbi n\u00e0y bao g\u1ed3m vi\u1ec7c l\u1ea5y m\u1ed9t m\u1eabu sinh thi\u1ebft nh\u1ecf t\u1eeb v\u00f9ng da ch\u01b0a b\u1ecb th\u01b0\u01a1ng c\u1ee7a b\u1ec7nh nh\u00e2n v\u00e0 s\u1eed d\u1ee5ng virus \u0111\u1ec3 \u0111\u01b0a m\u1ed9t b\u1ea3n sao kh\u1ecfe m\u1ea1nh c\u1ee7a gen \u0111\u1ed9t bi\u1ebfn v\u00e0o t\u1ebf b\u00e0o da c\u1ee7a b\u1ec7nh nh\u00e2n trong ph\u00f2ng th\u00ed nghi\u1ec7m. C\u00e1c t\u1ebf b\u00e0o \u0111\u01b0\u1ee3c bi\u1ebfn \u0111\u1ed5i gen \u0111\u01b0\u1ee3c nu\u00f4i c\u1ea5y th\u00e0nh c\u00e1c t\u1ea5m da c\u00f3 k\u00edch th\u01b0\u1edbc g\u1ea7n b\u1eb1ng m\u1ed9t th\u1ebb t\u00edn d\u1ee5ng. C\u00e1c t\u1ea5m t\u1ebf b\u00e0o da \u0111\u00e3 \u0111\u01b0\u1ee3c x\u1eed l\u00fd sau \u0111\u00f3 \u0111\u01b0\u1ee3c gh\u00e9p v\u00e0o c\u00e1c v\u1ebft th\u01b0\u01a1ng kh\u00f4ng l\u00e0nh c\u1ee7a b\u1ec7nh nh\u00e2n b\u1eb1ng ph\u1eabu thu\u1eadt. Li\u1ec7u ph\u00e1p t\u1ebf b\u00e0o n\u00e0y cung c\u1ea5p ngu\u1ed3n collagen lo\u1ea1i VII l\u00e2u d\u00e0i v\u00e0 ch\u1eefa l\u00e0nh c\u00e1c v\u1ebft th\u01b0\u01a1ng m\u00e3n t\u00ednh, \u0111au \u0111\u1edbn c\u1ee7a b\u1ec7nh nh\u00e2n.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Ti\u1ebfn s\u0129 Anthony Oro, \u0111\u1ed3ng gi\u00e1m \u0111\u1ed1c v\u00e0 \u0111\u1ed3ng s\u00e1ng l\u1eadp Trung t\u00e2m Y h\u1ecdc Ch\u1eefa tr\u1ecb v\u00e0 X\u00e1c \u0111\u1ecbnh (CDCM) v\u00e0 <\/span><i><span data-contrast=\"none\">Eugene v\u00e0 Gloria Bauer Gi\u00e1o s\u01b0 Da li\u1ec5u<\/span><\/i><span data-contrast=\"none\">. \u201cGi\u1edd \u0111\u00e2y ch\u00fang t\u00f4i c\u00f3 gi\u1ea3i ph\u00e1p c\u00f3 th\u1ec3 ph\u1ee5c h\u1ed3i v\u0129nh vi\u1ec5n l\u00e0n da b\u1ecb t\u1ed5n th\u01b0\u01a1ng c\u1ee7a h\u1ecd.\u201d<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u0110i\u1ec1u n\u00e0y kh\u00f4ng x\u1ea3y ra ch\u1ec9 sau m\u1ed9t \u0111\u00eam. Ti\u1ebfn s\u0129 Gene Bauer, hi\u1ec7n l\u00e0 gi\u00e1o s\u01b0 danh d\u1ef1 v\u1ec1 da li\u1ec5u, \u0111\u00e3 mang nghi\u00ean c\u1ee9u v\u1ec1 EB \u0111\u1ebfn Stanford h\u01a1n 20 n\u0103m tr\u01b0\u1edbc v\u00e0 t\u1eadp h\u1ee3p m\u1ed9t nh\u00f3m c\u00e1c nh\u00e0 nghi\u00ean c\u1ee9u, cu\u1ed1i c\u00f9ng \u0111\u00e3 d\u1eabn \u0111\u1ebfn b\u01b0\u1edbc \u0111\u1ed9t ph\u00e1 n\u00e0y. C\u00e1c m\u1ea3nh gh\u00e9p da \u0111\u1ea7u ti\u00ean \u0111\u00e3 \u0111\u01b0\u1ee3c th\u1eed nghi\u1ec7m trong th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng giai \u0111o\u1ea1n 1 do Ti\u1ebfn s\u0129 Alfred Lane, hi\u1ec7n l\u00e0 gi\u00e1o s\u01b0 danh d\u1ef1 v\u1ec1 da li\u1ec5u, v\u00e0 Ti\u1ebfn s\u0129 Peter Marinkovich, ph\u00f3 gi\u00e1o s\u01b0 v\u1ec1 da li\u1ec5u, d\u1eabn \u0111\u1ea7u. S\u1ef1 h\u1ed7 tr\u1ee3 b\u1ed5 sung \u0111\u1ebfn t\u1eeb Nh\u00e0 khoa h\u1ecdc C\u1ea5p cao Zurab Siprashvili v\u00e0 Paul Khavari, ch\u1ee7 nhi\u1ec7m Khoa Da li\u1ec5u, nh\u1eefng ng\u01b0\u1eddi \u0111\u00e3 cam k\u1ebft ph\u00e1t tri\u1ec3n li\u1ec7u ph\u00e1p n\u00e0y t\u1eeb t\u1ebf b\u00e0o, tr\u00ean chu\u1ed9t v\u00e0 tr\u00ean b\u1ec7nh nh\u00e2n.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Quay tr\u1edf l\u1ea1i n\u0103m 2017, khi CDCM \u0111\u01b0\u1ee3c th\u00e0nh l\u1eadp v\u1edbi s\u1ee9 m\u1ec7nh chuy\u1ec3n giao nh\u1eefng kh\u00e1m ph\u00e1 t\u1eeb ph\u00f2ng th\u00ed nghi\u1ec7m \u0111\u1ebfn b\u1ec7nh nh\u00e2n. Tang, m\u1ed9t nh\u00e0 nghi\u00ean c\u1ee9u c\u1ee7a CDCM, \u0111\u00e3 b\u1eaft \u0111\u1ea7u th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng giai \u0111o\u1ea1n 3 c\u1ee7a m\u00ecnh v\u00e0i n\u0103m sau \u0111\u00f3. C\u00e1c m\u1ea3nh gh\u00e9p da \u0111\u01b0\u1ee3c<\/span><span data-contrast=\"auto\">S\u1ea3n ph\u1ea9m \u0111\u1ea7u ti\u00ean \u0111\u01b0\u1ee3c FDA ch\u1ea5p thu\u1eadn xu\u1ea5t hi\u1ec7n t\u1ea1i CDCM, \u0111\u00e1nh d\u1ea5u m\u1ed9t c\u1ed9t m\u1ed1c quan tr\u1ecdng cho t\u1ed5 ch\u1ee9c n\u00e0y.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Kh\u00e1m ph\u00e1 c\u1ee7a h\u1ecd c\u00f3 th\u1ec3 d\u1eabn \u0111\u1ebfn nh\u1eefng \u0111\u1ed9t ph\u00e1 l\u1edbn h\u01a1n n\u1eefa. Ngo\u00e0i EB, ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb n\u00e0y c\u00f3 th\u1ec3 mang l\u1ea1i nh\u1eefng hi\u1ec3u bi\u1ebft s\u00e2u s\u1eafc cho ph\u00e9p Stanford gi\u1ea3i quy\u1ebft c\u00e1c b\u1ec7nh di truy\u1ec1n kh\u00e1c - trong \u0111\u00f3 m\u1ed9t gen duy nh\u1ea5t b\u1ecb \u1ea3nh h\u01b0\u1edfng - bao g\u1ed3m x\u01a1 nang, b\u1ec7nh tim m\u1ea1ch, b\u1ec7nh tho\u00e1i h\u00f3a th\u1ea7n kinh v\u00e0 ung th\u01b0 di truy\u1ec1n.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u201cB\u1ea5t k\u1ef3 th\u00e0nh c\u00f4ng n\u00e0o, b\u1ea5t k\u1ef3 ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb n\u00e0o, b\u1ea5t k\u1ef3 ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb n\u00e0o \u0111\u1ed1i v\u1edbi EB \u0111\u1ec1u s\u1ebd m\u1edf ra c\u00e1nh c\u1eeda v\u00e0 kh\u1ea3 n\u0103ng \u0111i\u1ec1u tr\u1ecb c\u00e1c b\u1ec7nh di truy\u1ec1n ph\u1ee9c t\u1ea1p kh\u00e1c\u201d, Tang n\u00f3i. \u201cEB s\u1ebd d\u1eabn \u0111\u1ea7u trong l\u0129nh v\u1ef1c li\u1ec7u ph\u00e1p di truy\u1ec1n!\u201d\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Ho\u1ea1t \u0111\u1ed9ng t\u1eeb thi\u1ec7n \u0111\u00e3 \u0111\u00f3ng m\u1ed9t vai tr\u00f2 quan tr\u1ecdng trong su\u1ed1t h\u00e0nh tr\u00ecnh n\u00e0y. S\u1ef1 h\u1ed7 tr\u1ee3 c\u1ee7a c\u00e1c nh\u00e0 t\u00e0i tr\u1ee3 \u0111\u00e3 g\u00f3p ph\u1ea7n quan tr\u1ecdng v\u00e0o vi\u1ec7c kh\u1edfi \u0111\u1ed9ng th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng giai \u0111o\u1ea1n 1, cho th\u1ea5y nh\u1eefng h\u1ee9a h\u1eb9n ban \u0111\u1ea7u v\u00e0 gi\u00fap thu h\u00fat c\u00e1c nh\u00e0 \u0111\u1ea7u t\u01b0 l\u1edbn h\u01a1n, bao g\u1ed3m Abeona Therapeutics, Epidermolysis Bullosa Medical Research Foundation v\u00e0 EB Research Partnership. Ti\u1ebfp n\u1ed1i \u0111\u00e0 ph\u00e1t tri\u1ec3n n\u00e0y, gia \u0111\u00ecnh nh\u00e0 t\u1eeb thi\u1ec7n Bowei Lee g\u1ea7n \u0111\u00e2y \u0111\u00e3 t\u1eb7ng m\u1ed9t m\u00f3n qu\u00e0 \u00fd ngh\u0129a \u0111\u1ec3 vinh danh \u00f4ng cho m\u1ed9t<\/span><span data-contrast=\"auto\">nghi\u00ean c\u1ee9u ti\u00ean ti\u1ebfn v\u1ec1 EB v\u00e0 c\u00e1c b\u1ec7nh hi\u1ebfm g\u1eb7p.\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u0110\u00e2y c\u0169ng l\u00e0 th\u1eddi \u0111i\u1ec3m nh\u1eadn th\u1ee9c v\u1ec1 EB ng\u00e0y c\u00e0ng t\u0103ng, \u0111\u01b0\u1ee3c th\u00fac \u0111\u1ea9y b\u1edfi nh\u1eefng ng\u01b0\u1eddi n\u1ed5i ti\u1ebfng nh\u01b0 Eddie Vedder c\u1ee7a Pearl Jam. B\u1ed9 phim t\u00e0i li\u1ec7u m\u1edbi c\u1ee7a anh \u1ea5y, <\/span><a href=\"https:\/\/www.matteroftimefilm.com\/\"><i><span data-contrast=\"none\">V\u1ea5n \u0111\u1ec1 th\u1eddi gian<\/span><\/i><\/a><span data-contrast=\"none\">, theo sau chuy\u1ebfn l\u01b0u di\u1ec5n solo \u0111\u1ea7u ti\u00ean c\u1ee7a anh, c\u00f9ng v\u1edbi nh\u1eefng c\u00e2u chuy\u1ec7n v\u1ec1 nh\u1eefng ng\u01b0\u1eddi b\u1ecb \u1ea3nh h\u01b0\u1edfng b\u1edfi EB v\u00e0 h\u00e0nh tr\u00ecnh nghi\u00ean c\u1ee9u c\u1ee7a Tang, \u0111\u00e3 \u0111\u01b0\u1ee3c c\u00f4ng chi\u1ebfu v\u00e0o \u0111\u1ea7u th\u00e1ng n\u00e0y t\u1ea1i Li\u00ean hoan phim Tribeca.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Nh\u1eefng gia \u0111\u00ecnh \u0111ang s\u1ed1ng chung v\u1edbi m\u1ed9t trong nh\u1eefng b\u1ec7nh ngo\u00e0i da nguy hi\u1ec3m nh\u1ea5t hi\u1ec7n nay c\u00f3 th\u00eam l\u00fd do \u0111\u1ec3 hy v\u1ecdng. G\u1ea7n \u0111\u00e2y, m\u1ed9t th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng giai \u0111o\u1ea1n 3 \u0111\u00e3 cho th\u1ea5y gen\u2026<\/p>","protected":false},"author":7,"featured_media":21391,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[148,164],"class_list":["post-21390","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-in-the-news","category-research"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Donor Support Advances New Treatment for EB, a Rare and Painful Skin Disease - Lucile Packard Foundation for Children&#039;s Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/lpfch.org\/vi\/impact-stories\/donor-support-advances-new-treatment-for-eb-a-rare-and-painful-skin-disease\/\" \/>\n<meta property=\"og:locale\" content=\"vi_VN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Donor Support Advances New Treatment for EB, a Rare and Painful Skin Disease\" \/>\n<meta property=\"og:description\" content=\"Families living with one of the most debilitating skin conditions now have more reason for hope. 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