亲亲发出吧唧吧唧的声音,美国女子监狱,av 丝袜 欧美 老 另类 亚洲,国色天香久久久久久久小说

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)

Chen Meiping, one of the directors of the drama "Rare Hug", poses for a portrait in Beijing, capital of China, Feb. 26, 2019. "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)

KEY WORDS:
EXPLORE XINHUANET
010020070750000000000000011100001378599001
主站蜘蛛池模板: 香格里拉县| 红原县| 宁都县| 宜章县| 锡林郭勒盟| 元朗区| 吉林省| 宜兰县| 高安市| 离岛区| 大姚县| 英超| 南宁市| 安泽县| 石渠县| 新疆| 庆城县| 赤峰市| 庄河市| 丹阳市| 小金县| 渑池县| 来宾市| 宁明县| 广德县| 定远县| 泗洪县| 庆元县| 苍南县| 敦化市| 邹城市| 安庆市| 宁化县| 溧阳市| 文登市| 永丰县| 五河县| 江孜县| 安龙县| 济阳县| 射阳县|