(190301) -- PECHINO, 1 marzo 2019 (Xinhua) -- Gong Xiaohan, 22, a cui è stato diagnosticato con miastenia gravis, comporta per un ritratto a Pechino Capitale della Cina, Feb 26, 2019. Il Gong Xiaohan si adoperò per trattamenti corretta per la sua malattia per anni e sono andato attraverso alti e bassi. Aveva imparato a non incolpare se stessa ma per accettare il modo in cui è stata e vivere con lei le malattie con un cuore aperto. 'Raro abbraccio," un dramma cinese sulle malattie rare, è stata messa in scena presso il Beijing Tianqiao Performing Arts Center mercoledì sera per contrassegnare il dodicesimo malattia rara giorno, che cade il 28 febbraio, 2019 sotto il tema "Salute a ponte un

• Collaboratore: Xinhua / Alamy Foto Stock
• ID dell’immagine: RTE17R
• Dimensioni dei file: 17,2 MB (402,4 KB Download compresso)
• Liberatorie: Modello - no | Proprietà - no
• Dimensioni: 2000 x 3000 px | 16,9 x 25,4 cm | 6,7 x 10 inches | 300dpi
• Data acquisizione: 26 febbraio 2019
• Fotografo: Xinhua

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(190301) -- BEIJING, March 1, 2019 (Xinhua) -- Gong Xiaohan, 22, diagnosed with myasthenia gravis, poses for a portrait in Beijing, capital of China, Feb. 26, 2019. Gong Xiaohan strove for proper treatments for her disease for years and went through ups and downs. She had learned not to blame herself but to accept the way she was and live with her diseases with an open heart. "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

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