Rare disease charity offers free consultations
A charity program offering multidisciplinary outpatient services for children with rare diseases will begin at Xinhua Hospital in June.
Sponsored by a 1-million-yuan (US$145,000) donation from an elderly couple, the program will allow patients to receive one free consultation from a group of specialists in diagnosis and treatment planning.
Patients will have the fee of around 1,000 yuan reimbursed after their diseases are confirmed to be on the nation’s rare disease list.
“We will make good use of the money and try to help the maximum number of patients,” said Dr Pan Shuming, vice president of Xinhua Hospital.
The hospital has specialist clinics for different rare diseases.
“We are working on a database for rare diseases to provide information and suggestions for the government,” Pan said.
The hospital’s specialists will give outpatient service at weekends in hospitals across the Yangtze River Delta region and train doctors in rare disease diagnosis and treatment in the region.
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.
There are over 16.8 million people with rare diseases in China.
Dr Li Ming from Xinhua Hospital examines a boy with rare disease.
