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Hong Kong healthcare and hospitals
Hong KongHealth & Environment

One in 67 Hongkongers suffers from a rare disease, study finds

More government support as well as easier and cheaper access to drugs urged

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Members of the Hong Kong Alliance for Rare Diseases and lawmaker Fernando Cheung Chiu-hung (third from left) urge the government to enhance medical support for patients with rare diseases. Photo: The Hong Kong Alliance for Rare Diseases.
Michelle Wong

One in every 67 Hong Kong residents suffers from a rare disease, and 80 per cent of this total inherited their illness from a parent, according to the city’s first study of its kind.

But the report’s lead author, Dr Brian Chung Hon-yin of the University of Hong Kong, said on Tuesday that the actual number was higher, noting that researchers were able to obtain statistics only from patients admitted to the city’s 43 public hospitals as of 2016, and not the 12 private hospitals in town.

Importation rules governing medications not registered in Hong Kong are strict. Photo: Alamy
Importation rules governing medications not registered in Hong Kong are strict. Photo: Alamy
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The definition of a rare disease varies by country, but it generally means between one and 10 patients are afflicted for every 10,000 people.

“And some rare diseases have not been diagnosed yet,” Chung added. “In recent years, there have been about 100 new diseases found annually around the world.”

In recent years, there have been about 100 new diseases found annually around the world
Dr Brian Chung Hon-yin, HKU

Between 6,000 and 8,000 rare diseases are now recognised internationally, and about 467 were identified in Hong Kong as of 2016. Examples include Pompe disease, which causes muscle weakness and breathing problems, and articular syndrome, which may cause skin rash, fever, and inflammation of the brain membrane.

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