Xinhua becomes leading Shanghai hospital in nationwide rare disease network

The National Health Commission has announced Xinhua Hospital as Shanghai’s leading hospital in a nationwide cooperation network for rare disease diagnosis and treatment.

The network will realize smoother hospital transfers and group consultation for patients with rare diseases, improving the nation’s capabilities in rare disease diagnosis and treatment.

Xinhua Hospital has established a system covering pre-pregnancy intervention, prenatal screening, after-delivery screening, timely intervention and treatment, and multidisciplinary diagnosis and treatment for rare disease-related complications.

“We are working on a whole-life management model for people with rare diseases from screening, detection, diagnosis, treatment and long-term management to regulate the prevention and treatment of such diseases,” said Dr Sun Kun, president of Xinhua Hospital, which has established a specialist database on rare diseases for patients to give them better access to good medical resources.

Rare diseases are those with incidence lower than one in every 500,000, or lower than one in every 10,000 among newborn babies. There are over 7,000 known rare diseases in the world, about 80 percent of which are inherited. Half of those with rare diseases show symptoms upon delivery or during childhood.

With over 16.8 million people with rare diseases in China, the reasons for the majority are still unknown.