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NHFPC participates in Ice Bucket Challenge


By Feng Hui

Updated: 2014-08-21

Why we should pay attention to rare disorders

China has 5,000 to 6,000 kinds of rare disorders, and 20,000 patients of ALS.

Wang said that there is neither an official definition about rare disorders in China, nor an official channel to learn about these diseases.

According to the WHO’s standard, a disease with a morbidity rate between between 65 out of 100,000 and 100 out of 100,000 can be classified as a rare disorder. In China, there are 5,000 to 6,000 kinds of rare disorders, and 20,000 patients of ALS, among which only 1 percent of these diseases have effective treatment costing millions of yuan a year. The other 99 percent rare disorder patients can prolong their life by intervention therapy.

What worries Wang about this is that it is hard to find out about rare disorders in medical textbooks, which will cause many rare disorder patients to be misdiagnosed. “We hope that not only the public can pay attention to rare disorders, but also the government can join to promote awareness,” Wang said.


Not everybody can participate in the Ice Bucket Challenge

The doctor warns that dumping ice water on the head will stimulate the brain’s blood vessels and raise blood pressure. People with high blood pressure and heart disease please be cautious to participate in the challenge.

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Link: China's Central Government / World Health Organization / United Nations Population Fund / UNICEF in China

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