Chinese drama on rare diseases "Rare Hug" staged in Beijing to mark 12th Rare Disease Day

    Source: Xinhua| 2019-03-01 10:50:47|Editor: zh
    Video PlayerClose

    (FOCUS)CHINA-BEIJING-RARE DISEASE-AWARENESS-PORTRAIT (CN)

    Xie Hangcheng, 26, diagnosed with albinism, poses for a portrait in Beijing, capital of China, Feb. 26, 2019. Xie met with a group of albinism patients when he was learning guitar in 2015. He took the chance to see what others could achieve and to reach out to the society. He joined a band named "8722" which consists of rare disease patients in 2017. "Rare Hug," a Chinese drama on rare diseases, was staged at the Beijing Tianqiao Performing Arts Center Wednesday evening to mark the 12th Rare Disease Day, which falls on Feb. 28, 2019 under the theme "Bridging Health and Social Care." The drama was played by rare disease patients in collaboration with their relatives. Assisted by two volunteer directors, the cast took part in a three-day workshop as well as rehearsals that lasted for two days, before presenting their real-life stories to the audience. Chen Meiping, one of the directors, has devoted herself to the public theatre and related arts since 2005. In late 2018, she worked with Yi'ou Wang, secretary-general of Illness Challenge Foundation, to come up with the idea of telling stories of rare disease patients with a collaborative drama. Before meeting the rare disease patients who volunteered to act in her drama, Chen was not so confident in the final result because they had only limited time for proper training. Chen was later surprised by the collaborating patients' readiness to perform and their desire to share their stories with others. "I am reassured by that desire," said Chen. "It is as if they can act themselves out immediately after they are up on the stage." The other director, Liang Wanyun, had been worried that the patients were amateurs who had not ever performed in a real drama and not sure whether they could go through the acting training in just three days. Yin Yuanyue, a 29-year-old volunteer actress in the drama who is diagnosed with muscular dystrophy, called for increased social awareness of the rare disease patient group. "What I am seeking is a sort of presence, as an actress for instance, that can act as encouragement for fellow patients who are still too afraid to reach for the outside world," she said. "It is particularly rare for a rare disease patient to rise to the stage and speak out for ourselves," said Pan Longfei, a 30-year-old volunteer actor who is diagnosed with Kallmann Syndrome. Subject to long-time isolation and misunderstanding by those around him, Pan hopes his performance could call on fellow patients to be conscious of their true selves and accept life as it is. Although rare diseases are found in a very small number of patients, most of them are incurable. Only five percent of rare diseases can be treated with medicine. About 80 percent of the 6,000 to 8,000 rare diseases known to us are gene-related, with more than 50 percent of them appearing in early childhood. According to World Health Organization (WHO) statistics, rare diseases affect a population of about 400 million worldwide, which means that for every 15 people there is one rare disease patient. Whereas in China, the number of people suffering from rare diseases is estimated to top 20 million. There are more than 100 rare disease patient support groups set up in accordance with disease categories in the country. (Xinhua/Jin Liwang)

    |<<   Prev 31 32 Next  

    KEY WORDS:
    EXPLORE XINHUANET
    010020070750000000000000011100001378599001
    主站蜘蛛池模板: 国产综合色在线视频区| 日本精品一二三区| 又黄又爽又色又刺激的视频| 天堂在线免费观看| 小泽码利亚射射射| 久久精品国产清自在天天线| 求网址你懂你的2022| 嘿咻视频免费网站| 国产成人精品1024在线| 国农村精品国产自线拍| 中文字幕一区二区三区久久网站 | 国产三级国产精品| 33333在线亚洲| 好妈妈5高清中字在线观看| 久久国产一久久高清| 欧美成人观看视频在线| 免费一区区三区四区| 色噜噜狠狠狠狠色综合久一| 国产欧美日韩一区二区加勒比| 99re视频精品全部免费| 成**人特级毛片www免费| 久久精品一区二区三区不卡| 欧美寡妇xxxx黑人猛交| 你懂的视频网站| 美女教师一级毛片| 国产在线一区二区| 西西人体欧美大胆在线| 大伊香蕉在线精品不卡视频| 下面一进一出好爽视频| 日本xxxⅹ色视频在线观看网站| 亚洲av无码一区二区三区天堂古代| 欧美黑人巨大3dvideo| 免费一级毛片在播放视频| 羞羞漫画页面免费入口欢迎你| 国产成人免费高清激情明星| 18到20岁女人一级毛片| 大香煮伊在2020久| 么公又大又硬又粗又爽视频| 欧美特黄一片aa大片免费看| 人文艺术欣赏ppt404| 精品国产AV色欲果冻传媒|