From surviving to thriving

Ten years ago patients with rare diseases would phone Wang Yiou's support organization in despair, many complaining they had no medication or were unable to afford treatment.

Today the situation is markedly different thanks in no small way to proactive government policies and the country's advances in innovative drug treatment.

The topics brought up in phone calls today have become increasingly diverse, said Wang, founder and secretary-general of the Illness Challenge Foundation, a Beijing-based organization that provides support to rare-disease patients across the country.

For example, parents who take care of their sick children worry about sudden seizures at night and are unable to sleep through the night, hoping for monitoring methods.

At school, children forget to take their medication and need inconspicuous smart pillboxes that don't cause psychological pressure, she cited as another example.

"Over the past decade, many rare-disease patients in China have moved from seeking medical treatment everywhere and having no available drugs to a new stage today, hoping for more convenient travel and socializing as well as better social integration and expression," she said.

"Many people's life conditions are very different from 10 years ago," said Wang, who has osteogenesis imperfecta, commonly known as brittle bone disease.

In mid-October, the foundation hosted an event in Hangzhou, Zhejiang province, a hub for tech firms. Ten teams, including school students and young workers, showcased their solutions to the daily needs of rare-disease patients to help them live more comfortably.

Despite all the improvements, there is still a long way to go in the treatment of rare diseases, experts said. There are over 10,000 known rare diseases worldwide, and about 20 million people in China are affected.

Globally, less than 10 percent of rare diseases have available treatments. In China, about 60 percent of patients with treatable diseases can access medication.