A group called “I Can Camp” of 19 rare disease patients staged a “Coexistence” dance performance in Jinan, capital city of east China’s Shandong Province, on July 25. They hope that more public attention could be directed to the diseases that affect them and thousands of others around China.
A rare disease is any disease that affects a small percentage of the population. According to the definition by the World Health Organization (WHO), the incidence of rare diseases is between 0.065–0.1 percent of the total population. It is estimated that there are over 10 million rare disease patients in China.
Due to a low incidence rate, these patients have often been ignored and misunderstood by the public. Also, the low incidence rate has landed them in a dilemma of lacking effective therapies, and the few medicines that can curb their disease tend to be so expensive that the national health insurance system does not cover the costs.
One of the rare diseases that may be best known is Osteogenesis imperfecta (OI), also known as brittle bone disease. People with brittle bones are prone to fracture and they may suffer dozens of breakages before becoming an adult. There are now over 100,000 OI patients in the country, desperate for aid and attention.