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Help plea for rare disease kids
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CITY doctors have called for more government support to help children suffering from rare diseases.
This would involve improved research in diagnosis and treatment, more financial support for patients and better training for medical staff, said experts from city hospitals on World Rare Disease Day on Saturday.
“There is a 30-year gap between China and Western countries in this field,” said Dr Chen Jing of the Shanghai Children’s Medical Center, which launched its rare disease diagnosis and treatment center over the weekend.
“This gap is caused by China’s poor molecular diagnosis standards, poor understanding by some medical staff and the poorer coverage on rare disease treatment,” said Chen.
She also said that while children with leukemia get financial help for stem cell transplants, children with rare diseases are not offered this. “The government must expand coverage for rare disease treatment,” Chen said.
The Shanghai Children’s Medical Center, the Shanghai Children’s Hospital and Xinhua Hospital have set up a genetic database of Chinese with rare diseases.
Rare diseases are those with an incidence of less than one in every 500,000 adults and less than one in 10,000 babies. In China, more than 16.8 million people suffer from rare diseases.
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