:::
發現希望21. 愛與希望的窗口－病友協會
觀看人次：
0
簡介
所謂的罕見疾病指的就是罹患率非常低、人數非常少的疾病，其中大部分是屬於遺傳性的疾病。過去，由於一般社會大眾、甚至政府部門對於罕見疾病的不了解，讓病患和家屬們因為疾病而吃盡苦頭，那種恐懼、折磨和無助是一般健康的人所無法體會的。於是一群因為曾經體悟生命痛楚的病友及家屬共組病友協會，提供一個堅實的堡壘，扮演著陽光的角色，要為病友帶來溫暖，帶來希望和愛。本集將邀請小腦萎縮症病友協會（企鵝家族）及運動神經元疾病病友協會（漸凍人協會）到節目中跟大家介紹這兩種罕見疾病，同時也要介紹病友協會能夠提供病友的服務內容。
關於
分級:
普遍級片長:
50 min發音:
華語發行:
2006-12導演:
朱慕蓉,章又中,高明帝,公視基金會
%20--%3e%3csvg%20version='1.1'%20id='圖層_1'%20xmlns='http://www.w3.org/2000/svg'%20xmlns:xlink='http://www.w3.org/1999/xlink'%20x='0px'%20y='0px'%20viewBox='0%200%2030%2030'%20style='enable-background:new%200%200%2030%2030;'%20xml:space='preserve'%3e%3cstyle%20type='text/css'%3e%20.st0{fill-rule:evenodd;clip-rule:evenodd;fill:%23FF6116;}%20.st1{fill:%23FF6116;}%20%3c/style%3e%3cpath%20class='st0'%20d='M21,15c0-3.3-2.8-6-6.2-6s-6.2,2.7-6.2,6c0,3,2.3,5.5,5.3,5.9v-4.2h-1.6V15h1.6v-1.3c0-1.5,0.9-2.3,2.4-2.3%20c0.7,0,1.4,0.1,1.4,0.1V13h-0.8c-0.8,0-1,0.5-1,0.9V15h1.7l-0.3,1.7h-1.5V21C18.7,20.5,21,18,21,15z'/%3e%3cg%3e%3cpath%20class='st1'%20d='M15,30C6.7,30,0,23.3,0,15S6.7,0,15,0s15,6.7,15,15S23.3,30,15,30z%20M15,1C7.3,1,1,7.3,1,15s6.3,14,14,14%20s14-6.3,14-14S22.7,1,15,1z'/%3e%3c/g%3e%3c/svg%3e)
%20--%3e%3csvg%20version='1.1'%20id='圖層_1'%20xmlns='http://www.w3.org/2000/svg'%20xmlns:xlink='http://www.w3.org/1999/xlink'%20x='0px'%20y='0px'%20viewBox='0%200%2030%2030'%20style='enable-background:new%200%200%2030%2030;'%20xml:space='preserve'%3e%3cstyle%20type='text/css'%3e%20.st0{fill:%23EA3D15;}%20.st1{fill-rule:evenodd;clip-rule:evenodd;fill:%23FFFFFF;}%20.st2{fill:%23FF6116;}%20%3c/style%3e%3cpath%20class='st0'%20d='M15,30L15,30C6.7,30,0,23.3,0,15v0C0,6.7,6.7,0,15,0h0c8.3,0,15,6.7,15,15v0C30,23.3,23.3,30,15,30z'/%3e%3cpath%20class='st1'%20d='M21,15c0-3.3-2.8-6-6.2-6s-6.2,2.7-6.2,6c0,3,2.3,5.5,5.3,5.9v-4.2h-1.6V15h1.6v-1.3c0-1.5,0.9-2.3,2.4-2.3%20c0.7,0,1.4,0.1,1.4,0.1V13h-0.8c-0.8,0-1,0.5-1,0.9V15h1.7l-0.3,1.7h-1.5V21C18.7,20.5,21,18,21,15z'/%3e%3cg%3e%3cpath%20class='st2'%20d='M15,30C6.7,30,0,23.3,0,15S6.7,0,15,0s15,6.7,15,15S23.3,30,15,30z%20M15,1C7.3,1,1,7.3,1,15s6.3,14,14,14%20s14-6.3,14-14S22.7,1,15,1z'/%3e%3c/g%3e%3c/svg%3e)
%20--%3e%3csvg%20version='1.1'%20id='_圖層_1'%20xmlns='http://www.w3.org/2000/svg'%20xmlns:xlink='http://www.w3.org/1999/xlink'%20x='0px'%20y='0px'%20viewBox='0%200%2030%2030'%20style='enable-background:new%200%200%2030%2030;'%20xml:space='preserve'%3e%3cstyle%20type='text/css'%3e%20.st0{fill:%23FF6116;}%20%3c/style%3e%3cpath%20class='st0'%20d='M15,30C6.7,30,0,23.3,0,15S6.7,0,15,0s15,6.7,15,15S23.3,30,15,30z%20M15,1C7.3,1,1,7.3,1,15s6.3,14,14,14%20s14-6.3,14-14S22.7,1,15,1z'/%3e%3cg%3e%3cpath%20class='st0'%20d='M17.5,10.1c0.7,0,1.3,0.3,1.8,0.7s0.7,1.1,0.7,1.7v4.9c0,0.6-0.3,1.3-0.7,1.7s-1.1,0.7-1.8,0.7h-5.1%20c-0.7,0-1.3-0.3-1.8-0.7c-0.5-0.5-0.7-1.1-0.7-1.7v-4.9c0-0.6,0.3-1.3,0.7-1.7c0.5-0.5,1.1-0.7,1.8-0.7H17.5z%20M17.5,9.1h-5.1%20c-2,0-3.6,1.5-3.6,3.4v4.9c0,1.9,1.6,3.4,3.6,3.4h5.1c2,0,3.6-1.5,3.6-3.4v-4.9C21.1,10.6,19.5,9.1,17.5,9.1z'/%3e%3cpath%20class='st0'%20d='M18.3,12.6c-0.2,0-0.3,0-0.4-0.1c-0.1,0-0.2-0.2-0.3-0.3c0-0.1,0-0.3,0-0.4c0-0.1,0.1-0.3,0.2-0.4%20c0.1-0.1,0.2-0.2,0.4-0.2c0.1,0,0.3,0,0.4,0s0.3,0.1,0.3,0.3c0,0.1,0.1,0.3,0.1,0.4c0,0,0,0.2,0,0.3c0,0,0,0.2-0.2,0.2%20c0,0-0.2,0.1-0.2,0.2C18.6,12.6,18.4,12.6,18.3,12.6z%20M15,13c0.4,0,0.8,0.1,1.1,0.3c0.3,0.2,0.6,0.5,0.7,0.9%20c0.2,0.4,0.2,0.8,0.1,1.1c0,0.4-0.3,0.7-0.6,1c-0.3,0.3-0.6,0.5-1,0.5s-0.8,0-1.2-0.1s-0.7-0.4-0.9-0.7s-0.3-0.7-0.3-1.1%20c0-0.5,0.2-1,0.6-1.4c0.4-0.4,0.9-0.6,1.4-0.6L15,13z%20M15,12.1c-0.6,0-1.2,0.2-1.7,0.5s-0.9,0.8-1.1,1.3C12,14.4,11.9,15,12,15.6%20c0.1,0.6,0.4,1.1,0.8,1.5c0.4,0.4,1,0.7,1.6,0.8c0.6,0.1,1.2,0,1.8-0.2s1-0.6,1.4-1.1c0.3-0.5,0.5-1.1,0.5-1.6s-0.3-1.5-0.9-2.1%20S15.9,12,15,12L15,12.1z'/%3e%3c/g%3e%3c/svg%3e)
%20--%3e%3csvg%20version='1.1'%20id='_圖層_1'%20xmlns='http://www.w3.org/2000/svg'%20xmlns:xlink='http://www.w3.org/1999/xlink'%20x='0px'%20y='0px'%20viewBox='0%200%2030%2030'%20style='enable-background:new%200%200%2030%2030;'%20xml:space='preserve'%3e%3cstyle%20type='text/css'%3e%20.st0{fill:%23EA3D15;}%20.st1{fill:%23FF6116;}%20.st2{fill:%23FFFFFF;}%20%3c/style%3e%3cpath%20class='st0'%20d='M15,30L15,30C6.7,30,0,23.3,0,15v0C0,6.7,6.7,0,15,0h0c8.3,0,15,6.7,15,15v0C30,23.3,23.3,30,15,30z'/%3e%3cpath%20class='st1'%20d='M15,30C6.7,30,0,23.3,0,15S6.7,0,15,0s15,6.7,15,15S23.3,30,15,30z%20M15,1C7.3,1,1,7.3,1,15s6.3,14,14,14%20s14-6.3,14-14S22.7,1,15,1z'/%3e%3cg%3e%3cpath%20class='st2'%20d='M17.5,10.1c0.7,0,1.3,0.3,1.8,0.7s0.7,1.1,0.7,1.7v4.9c0,0.6-0.3,1.3-0.7,1.7s-1.1,0.7-1.8,0.7h-5.1%20c-0.7,0-1.3-0.3-1.8-0.7c-0.5-0.5-0.7-1.1-0.7-1.7v-4.9c0-0.6,0.3-1.3,0.7-1.7c0.5-0.5,1.1-0.7,1.8-0.7H17.5z%20M17.5,9.1h-5.1%20c-2,0-3.6,1.5-3.6,3.4v4.9c0,1.9,1.6,3.4,3.6,3.4h5.1c2,0,3.6-1.5,3.6-3.4v-4.9C21.1,10.6,19.5,9.1,17.5,9.1z'/%3e%3cpath%20class='st2'%20d='M18.3,12.6c-0.2,0-0.3,0-0.4-0.1c-0.1,0-0.2-0.2-0.3-0.3c0-0.1,0-0.3,0-0.4c0-0.1,0.1-0.3,0.2-0.4%20c0.1-0.1,0.2-0.2,0.4-0.2c0.1,0,0.3,0,0.4,0s0.3,0.1,0.3,0.3c0,0.1,0.1,0.3,0.1,0.4c0,0,0,0.2,0,0.3c0,0,0,0.2-0.2,0.2%20c0,0-0.2,0.1-0.2,0.2C18.6,12.6,18.4,12.6,18.3,12.6z%20M15,13c0.4,0,0.8,0.1,1.1,0.3c0.3,0.2,0.6,0.5,0.7,0.9%20c0.2,0.4,0.2,0.8,0.1,1.1c0,0.4-0.3,0.7-0.6,1c-0.3,0.3-0.6,0.5-1,0.5s-0.8,0-1.2-0.1s-0.7-0.4-0.9-0.7s-0.3-0.7-0.3-1.1%20c0-0.5,0.2-1,0.6-1.4c0.4-0.4,0.9-0.6,1.4-0.6L15,13z%20M15,12.1c-0.6,0-1.2,0.2-1.7,0.5s-0.9,0.8-1.1,1.3C12,14.4,11.9,15,12,15.6%20s0.4,1.1,0.8,1.5c0.4,0.4,1,0.7,1.6,0.8c0.6,0.1,1.2,0,1.8-0.2s1-0.6,1.4-1.1c0.3-0.5,0.5-1.1,0.5-1.6s-0.3-1.5-0.9-2.1%20S15.9,12,15,12V12.1z'/%3e%3c/g%3e%3c/svg%3e)
%20--%3e%3csvg%20version='1.1'%20id='圖層_1'%20xmlns='http://www.w3.org/2000/svg'%20xmlns:xlink='http://www.w3.org/1999/xlink'%20x='0px'%20y='0px'%20viewBox='0%200%2030%2030'%20style='enable-background:new%200%200%2030%2030;'%20xml:space='preserve'%3e%3cstyle%20type='text/css'%3e%20.st0{fill:%23FF6116;}%20%3c/style%3e%3cg%3e%3cg%3e%3cpath%20class='st0'%20d='M15,30C6.7,30,0,23.3,0,15S6.7,0,15,0s15,6.7,15,15S23.3,30,15,30z%20M15,1C7.3,1,1,7.3,1,15s6.3,14,14,14%20s14-6.3,14-14S22.7,1,15,1z'/%3e%3c/g%3e%3cpath%20class='st0'%20d='M20.8,12.4c0,0-0.1-0.8-0.5-1.2c-0.5-0.5-1-0.5-1.2-0.5c-1.7-0.1-4.3-0.1-4.3-0.1l0,0c0,0-2.6,0-4.3,0.1%20c-0.2,0-0.8,0-1.2,0.5c-0.4,0.4-0.5,1.2-0.5,1.2s-0.1,1-0.1,2v0.9c0,1,0.1,2,0.1,2s0.1,0.8,0.5,1.2C9.8,19,10.4,19,10.7,19%20c1,0.1,4.2,0.1,4.2,0.1s2.6,0,4.3-0.1c0.2,0,0.8,0,1.2-0.5c0.4-0.4,0.5-1.2,0.5-1.2s0.1-1,0.1-2v-0.9%20C20.9,13.4,20.8,12.4,20.8,12.4z%20M13.5,16.5V13l3.3,1.7L13.5,16.5z'/%3e%3c/g%3e%3c/svg%3e)
%20--%3e%3csvg%20version='1.1'%20id='圖層_1'%20xmlns='http://www.w3.org/2000/svg'%20xmlns:xlink='http://www.w3.org/1999/xlink'%20x='0px'%20y='0px'%20viewBox='0%200%2030%2030'%20style='enable-background:new%200%200%2030%2030;'%20xml:space='preserve'%3e%3cstyle%20type='text/css'%3e%20.st0{fill:%23EA3D15;}%20.st1{fill:%23FF6116;}%20.st2{fill:%23FFFFFF;}%20%3c/style%3e%3cpath%20class='st0'%20d='M15,30L15,30C6.7,30,0,23.3,0,15v0C0,6.7,6.7,0,15,0h0c8.3,0,15,6.7,15,15v0C30,23.3,23.3,30,15,30z'/%3e%3cg%3e%3cg%3e%3cpath%20class='st1'%20d='M15,30C6.7,30,0,23.3,0,15S6.7,0,15,0s15,6.7,15,15S23.3,30,15,30z%20M15,1C7.3,1,1,7.3,1,15s6.3,14,14,14%20s14-6.3,14-14S22.7,1,15,1z'/%3e%3c/g%3e%3cpath%20class='st2'%20d='M20.8,12.4c0,0-0.1-0.8-0.5-1.2c-0.5-0.5-1-0.5-1.2-0.5c-1.7-0.1-4.3-0.1-4.3-0.1l0,0c0,0-2.6,0-4.3,0.1%20c-0.2,0-0.8,0-1.2,0.5c-0.4,0.4-0.5,1.2-0.5,1.2s-0.1,1-0.1,2v0.9c0,1,0.1,2,0.1,2s0.1,0.8,0.5,1.2C9.8,19,10.4,19,10.7,19%20c1,0.1,4.2,0.1,4.2,0.1s2.6,0,4.3-0.1c0.2,0,0.8,0,1.2-0.5c0.4-0.4,0.5-1.2,0.5-1.2s0.1-1,0.1-2v-0.9%20C20.9,13.4,20.8,12.4,20.8,12.4z%20M13.5,16.5V13l3.3,1.7L13.5,16.5z'/%3e%3c/g%3e%3c/svg%3e)