日日爽I天天爽天天爽I日韩有码第一页I国产中文字幕在线观看I狠狠躁夜夜a产精品视频I在线免费av播放I麻豆免费视频I91成人免费

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)

Pan Longfei, 30, diagnosed with Kallmann Syndrome, poses for a portrait in Beijing, capital of China, Feb. 26, 2019. Pan was misdiagnosed multiple times before the age of 23. He had long been isolated and misunderstood throughout adolescence due to the lack of sense of smell and poorly defined secondary sexual characteristics. The syndrome can be helped with the injection of human chorionic gonadotropin (HCG), a hormone. After going through the time of feeling inferior and sentimental and the trouble of self identification, Pan has actively cooperated with the medical treatment and learned to accept and love the way he is. "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/Zhang Yuwei)

KEY WORDS:
EXPLORE XINHUANET
010020070750000000000000011100001378599001
主站蜘蛛池模板: a在线一区| 久久综合网色—综合色88 | 国产1区2区| 日韩系列在线 | 国产精品美女久久久久久免费 | 麻豆成人网 | 天天操天天干天天爱 | 国产精品午夜免费福利视频 | 东方av免费在线观看 | 成人免费网站视频 | 精品国产一区二区三区久久久蜜臀 | 国产亚洲人成网站在线观看 | 国产在线观看国语版免费 | 欧美在线日韩在线 | 午夜免费在线观看 | 亚洲高清激情 | 午夜.dj高清免费观看视频 | 操碰av| 91精品网站 | 欧美精品一区在线发布 | 亚洲不卡av一区二区三区 | 色偷偷97| 国内精品在线看 | 国产系列在线观看 | 99亚洲天堂 | 精品在线二区 | 国产色区| 18做爰免费视频网站 | 亚洲人成综合 | 五月婷婷狠狠 | 天天综合天天综合 | 日本黄色大片免费看 | 日本动漫做毛片一区二区 | 黄色av成人在线观看 | 日本电影黄色 | 少妇bbb搡bbbb搡bbbb′ | 奇米7777狠狠狠琪琪视频 | 国产精品美女www爽爽爽视频 | 91欧美视频网站 | av一区在线| 狠狠狠狠狠狠 | 97视频在线观看成人 | 在线精品亚洲一区二区 | 欧美日bb | 丰满少妇在线观看 | 18性欧美xxxⅹ性满足 | 狠狠干夜夜爱 | 成人黄色毛片 | 日本黄色免费观看 | 一级淫片在线观看 | 911国产| 婷婷av综合 | 国内精品久久久久久中文字幕 | 香蕉久草| 久久这里只精品 | 深夜男人影院 | 日韩理论在线观看 | 亚洲精品国产精品99久久 | www.色就是色 | 人人舔人人爱 | 高潮毛片无遮挡高清免费 | 69国产成人综合久久精品欧美 | 成人在线免费视频观看 | 午夜视频在线网站 | 午夜久草| 99精品视频免费全部在线 | 五月婷婷在线观看 | 人人爱人人爽 | 国内99视频 | 国产精品欧美精品 | 99麻豆视频| 国产精品一区二区久久精品 | 国产精品 9999 | 视频在线一区 | 天天操天| 天天射天天色天天干 | 日韩视频在线不卡 | 亚洲欧美国产视频 | 久久96国产精品久久99软件 | 91视频-88av | 精品国产一区二区三区免费 | 91欧美在线| 久久黄色a级片 | 欧美日韩不卡在线视频 | 草久草久| 亚洲精品成人av在线 | 成人国产精品久久久 | 久草在线这里只有精品 | 69视频在线 | 日韩欧美在线免费观看 | 久久 亚洲视频 | 91观看视频| 国产91综合一区在线观看 | 国产一级片在线播放 | 国产中文字幕视频在线观看 | 97在线看片 | 日韩在线观看视频一区二区三区 | 国产偷国产偷亚洲清高 | 日韩成人精品一区二区 |