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科学界不了解我孩子的罕见疾病，直到我决定去研究它
1,401,020 views |
莎朗 · 泰利 |
TEDMED 2016
• November 2016
Read transcript
莎朗 · 泰利，一位前大学牧师兼留家庭主妇，当她的两个孩子被诊断患有假性黄斑假单胞菌（PXE）的罕见疾病时，她做起了医学研究。 在这次吸引人的演讲中，特里解释了她和她的丈夫是如何成为公民科学家的，分享了他们找到PXE背后的基因而在实验室工作到午夜的故事，并呼吁研究人员要分享生物样本并共同合作。
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