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  • User account | Huange Foundation
    only be used if you wish to receive a new password or wish to receive certain news or notifications by e mail Misc Info 個人信息 My Name 我的姓名 Please enter your full name 請輸入你的姓名 Gender 性別 Male 男性 Female 女性 Please select your gender 請選擇你的性別 Birth Date 生日 Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1900 1901 1902 1903 1904 1905 1906 1907 1908 1909 1910 1911 1912 1913 1914 1915 1916 1917 1918 1919 1920 1921 1922 1923 1924 1925 1926 1927 1928 1929 1930 1931 1932 1933 1934 1935 1936 1937 1938 1939 1940 1941 1942 1943 1944 1945 1946 1947 1948 1949 1950 1951 1952 1953 1954 1955 1956 1957 1958 1959 1960 1961 1962 1963 1964 1965 1966 1967 1968 1969 1970 1971 1972 1973 1974 1975 1976 1977 1978 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029 2030 2031 2032 2033 2034 2035 2036 2037 2038 2039 2040 2041 2042 2043 2044 2045 2046 2047 2048 2049 2050 Please enter your birthday 請輸入你的生日 Phone Number 電話號碼 Optional Enter your phone number if you want us to call you by phone 請輸入你的電話號碼 Register Reason 注冊原因 No reason or I rather not say 我不想說 I am affected by a retinal degenerative disease 我有視網膜眼病 I will be affected by a retinal degenerative disease 我將會有視網膜眼病 My spouse is affected by

    Original URL path: http://huange.org/web6/user/register (2016-02-16)
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  • User account | Huange Foundation
    Links Doctors Forum Contact Us Navigation Recent posts Feed aggregator Text Size Increase Normal Decrease Current Size 100 Languages 简体中文 繁體中文 English Home User account User account Create new account Log in Request new password Username or e mail address

    Original URL path: http://huange.org/web6/user/password (2016-02-16)
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  • 欢迎访问黄义基金! | 黄 义 基 金 会
    Size Increase Normal Decrease Current Size 93 语言 简体中文 繁體中文 English 欢迎访问黄义基金 The text size have been saved as 107 The text size have been saved as 100 The text size have been saved as 93 黄义基金会的宗旨 是改善那些遗传性夜盲症病人的生活质量 遗传性夜盲症也叫视网膜色素变性 简称RP

    Original URL path: http://huange.org/web6/zh-hans (2016-02-16)
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  • 歡迎訪問黃義基金 | 黃 義 基 金 會
    分類鏈接 醫生專區 聯繫我們 導航 最新文章 RSS 聯播 使用者登入 使用者名稱 密碼 註冊新帳號 索取新密碼 Text Size Increase Normal Decrease Current Size 93 語言 简体中文 繁體中文 English 歡迎訪問黃義基金 黃義基金會的宗旨 是改善那些遺傳性夜盲症病人的生活品質 遺傳性夜盲症也叫視網膜色素變性 簡稱RP 全世界大概有150萬人患有視網膜色素變性 儘管在剛過去的二十年裏 科學家們從分子層面和基因療法上對視網膜色素變性的瞭解有了長足的進步 但是還沒有找到真正能用於治療RP的方法 我們面前的RP科研之路還很長 自少年時出現夜盲起 視網膜色素變性患者可能在幾年至幾十年內 慢慢地失去他們白天的視力 直至完全失明 這是個長時間的折磨 病人不得不時時承受著擔心失明的焦慮

    Original URL path: http://huange.org/web6/zh-hant (2016-02-16)
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  • Purpose of the Web Site | Huange Foundation
    RP patients not only cope gracefully but often attain extraordinary achievements Many excel in business scholarship arts sports and social service just to name a few areas Often these achievements are made after the total loss of sight These brave individuals have thus demonstrated that diminished sight does not necessarily diminish life Surely daily life after loss of normal sight is much more difficult than before However it seems that there are hidden capabilities in a person that can be developed and honed to perfection after the disappearance of the original function In the story of one film director who had lost his sight to RP he managed to train himself to rely on an inner vision when creating films He has developed a keen ability to translate what he hears into a visual language Once during filming he asked an actress to sing the landscape to him Then in an inspirational use of creative genius he used her song to create his script for the film Despite these uplifting accounts there is the other side of the proverbial coin From the day of diagnosis through the many years of persistent decline in sight to the final near total or total blindness the journey is often a painful one There is no doubt that grieving whether it is shown outwardly or not accompanies RP Grieving for the loss of one s sight is just as heavy as mourning for the death of a loved one Grief especially when borne alone could sink a person into darkness far beyond the absence of light Paralleling the emotional plight tangibles such as career advancement financial security and independent mobility can be curtailed by RP Adapting to forced dependency one quickly learns the hard lesson that the generosity of others may not be sustainable

    Original URL path: http://huange.org/web6/node/35 (2016-02-16)
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  • 欢迎访问黄义基金! | 黄 义 基 金 会
    医生专区 联系我们 导航 最近的帖子 RSS 总计 用户登录 用户名 密码 创建新帐号 重设密码 Text Size Increase Normal Decrease Current Size 93 语言 简体中文 繁體中文 English 欢迎访问黄义基金 黄义基金会的宗旨 是改善那些遗传性夜盲症病人的生活质量 遗传性夜盲症也叫视网膜色素变性 简称RP 全世界大概有150万人患有视网膜色素变性 尽管在刚过去的二十年里 科学家们从分子层面和基因疗法上对视网膜色素变性的了解有了长足的进步 但是还没有找到真正能用于治疗RP的方法 我们面前的RP科研之路还很长 自少年时出现夜盲起 视网膜色素变性患者可能在几年至几十年内 慢慢地失去他们白天的视力 直至完全失明 这是个长时间的折磨 病人不得不时时承受着担心失明的焦虑 黄义基金会旨在给这一群体提供教育

    Original URL path: http://huange.org/web6/zh-hans/home (2016-02-16)
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  • 歡迎訪問黃義基金 | 黃 義 基 金 會
    分類鏈接 醫生專區 聯繫我們 導航 最新文章 RSS 聯播 使用者登入 使用者名稱 密碼 註冊新帳號 索取新密碼 Text Size Increase Normal Decrease Current Size 93 語言 简体中文 繁體中文 English 歡迎訪問黃義基金 黃義基金會的宗旨 是改善那些遺傳性夜盲症病人的生活品質 遺傳性夜盲症也叫視網膜色素變性 簡稱RP 全世界大概有150萬人患有視網膜色素變性 儘管在剛過去的二十年裏 科學家們從分子層面和基因療法上對視網膜色素變性的瞭解有了長足的進步 但是還沒有找到真正能用於治療RP的方法 我們面前的RP科研之路還很長 自少年時出現夜盲起 視網膜色素變性患者可能在幾年至幾十年內 慢慢地失去他們白天的視力 直至完全失明 這是個長時間的折磨 病人不得不時時承受著擔心失明的焦慮

    Original URL path: http://huange.org/web6/zh-hant/home (2016-02-16)
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  • Welcome to Huange Foundation | Huange Foundation
    disorders known as retinitis pigmentosa RP Approximately 1 5 million people worldwide are afflicted with RP In spite of the huge strides made in the past two decades in understanding the molecular genetics of RP and in gene therapy much more needs to be done before effective treatments for RP can be made widely accessible to all RP patients From night blindness that typically starts during the early teens RP

    Original URL path: http://huange.org/web6/home?destination=node%2F3 (2016-02-16)
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