国产精品99一区二区三_免费中文日韩_国产在线精品一区二区_日本成人手机在线

Drama on rare diseases played by patients, relatives staged in Beijing

Source: Xinhua| 2019-02-28 21:18:19|Editor: ZX
Video PlayerClose

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

Director Chen Meiping (R) gives instructions to rare disease patient Pan Longfei during a rehearsal for "Rare Hug", a drama on rare diseases, at Beijing Tianqiao Performance Arts Center 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)

   Prev 1 2 3 4 5 6 7 8 9 10 Next   >>|

KEY WORDS:
EXPLORE XINHUANET
010020070750000000000000011100001378582011
主站蜘蛛池模板: 乐业县| 正定县| 黔南| 岐山县| 辽宁省| 奈曼旗| 玉田县| 太谷县| 波密县| 来凤县| 汨罗市| 沧州市| 容城县| 连江县| 麻阳| 丰县| 雷州市| 文山县| 阿城市| 敦煌市| 辉南县| 临安市| 瑞安市| 射阳县| 张家港市| 吉林省| 海安县| 新源县| 商洛市| 安仁县| 嘉祥县| 灵丘县| 丹寨县| 华蓥市| 洪泽县| 宕昌县| 大冶市| 南皮县| 黄浦区| 平远县| 晋州市|