Rare Diseases
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| Simon Caulton. cc-by-sa 3.0 |
When the devastating Pompe disease stroke Megan and Patrick, rendering the siblings hard to move and even breathe, they were at the ages of five and four, respectively. Looking at their kids now bound to the wheelchair and ventilator, Aileen and John Crowley were appalled and in disbelief. This was because they had learned, at that time, there was no cure for this disease.
But what did this father do to save his children?
Read "Extraordinary Measures: Reforming China's Rare Disease Policy" by Xiaohe Li and Fei Gao, junior Life Sciences majors at Nanjing University, September 1, 2010 | Vol. 2 | No. 2 | pages 30-32.
News article on Southern Weekly and its translation in English.
Magazine article in Chinese.
