无码少妇一区二区三区免费,妓院一钑片免看黄大片,国语自产视频在线,亚洲AV成人无码国产一区二区,激情久久综合精品久久人妻,日韩免费毛片,综合成人亚洲网友偷自拍,国内自拍视频在线观看,欧美熟妇性xxxx交潮喷,国产成人精品一区二免费网站

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
亚洲成年网站在线观看| 日本一区不卡高清在线观看| 一级片黄色一区二区三区| 国产激情精品一区二区三区| 国产精品麻豆成人av电影艾秋| 少妇高潮伦| 乱中年女人伦av三区| 被灌满精子的少妇视频| 97无码精品综合| 日本熟妇人妻一区二区三区| 国产精成人品一区| 色老头亚洲成人免费影院| 国产欧美另类久久久精品丝瓜| 久久精品人妻中文系列| 两个奶头被吃高潮视频| 久久人搡人人玩人妻精品| 99中文字幕精品国产| 偷窥盗摄国产在线视频| 亚洲女同一区二区久久| mm131午夜福利在线观看| 中文人妻av久久人妻水蜜桃 | 欧美日韩va| 国产精品99久久国产小草| 乱人伦中文字幕成人网站在线| 中文 在线 日韩 亚洲 欧美| 天天躁日日躁狠狠躁av| 99久久精品国产一区二区蜜芽| av一区二区精品在线| 99人体免费视频| 亚洲色成人四虎在线观看| 午夜福利激情一区二区三区| 欧美《熟妇的荡欲》在线观看| 国产精品无码无在线观看| 亚洲国产精品国自产拍av在线| 精品亚洲aⅴ在线观看| 国产98在线 | 日韩| 日韩黄色av一区二区三区| 毛片av在线尤物一区二区| 四虎永久在线精品视频观看| 欧美日韩人妻精品一区二区三区| 亚洲国产精品久久久久秋霞影院|