China launches anti-rare-disease alliance

Seventeen medical institutions launched China’s first national organization against rare diseases on the eve of the World Rare Disease Day, in Jinan of east China’s Shandong Province.

China Rare Diseases Prevention and Treatment Alliance is committed to the establishment of rare disease treatment centers across the country, research on the cure of such conditions, publicity and medical education of rare diseases, said Han Jinxiang, Communist Party of China secretary of the Shandong Academy of Medical Sciences, on Wednesday.

The academy is a founding member of the alliance, and the 17 medical institutions are from 13 provinces.

The alliance will assist in data collection of rare diseases, carry out epidemiological studies and improve treatment, said Han.

According to the World Health Organization, a rare disease is one that affects a small percentage of the population, ranging from 0.65 in 1,000 to 1 in 1,000. More than 6,000 rare diseases have been confirmed so far.

As rare diseases are hard to detect and diagnose, many patients have suffered from delayed and wrong treatment.

The World Rare Disease Day falls on Thursday.


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