The conference was held on Sunday to mark International Rare Disease Day.
A rare disease is defined as one that affects one in 500 people to one in 2,000 people. An estimated 350 million people suffer from rare diseases in the world. While a majority of the conditions are genetic in origin, others are the result of infections, and environment or degenerative factors.
Rare diseases usually appear in early in life and about 30 per cent of the children with rare diseases die before the age of five.
Dr Vu Chi Dung, head of the department of endocrinology, medical genetics and metabolism under the National Hospital of Pediatrics (NHP), said the hospital was one of the few places that paid attention to patients suffering from rare diseases.
Dung said the detection and treatment of rare diseases in Viet Nam faced difficulties, particularly in terms of funding and scientific medical data.
The hospital has been documenting the health records of 9,000 patients with rare diseases.
In the last 10 years, it has detected more than 300 children suffering from one of 25 rare diseases.
Few of the diseases have specific medicines for treatment, which are also mostly expensive and time-consuming.
Some treatments required up to VND1 billion (US$44,800) per month, Dung said, which patients’ families could not afford.
The hospital has been offering training courses about rare diseases to health workers at different levels since 2013.
The hospital has also called for health insurance coverage of rare disease patients, he said.
The community of patients of rare diseases in Viet Nam achieved a significant milestone in November 2014, with the launch of the country’s first and only Rare Disease Patient Club by the NHP. In a country of more than 90 million people, the NHP is the only hospital that provides treatment for lysosomal storage disorders in the north.
Rare Disease Day, which falls on the last day of February, aims to raise awareness among the general public and decision makers about rare diseases and the impact that they have on patients’ lives.
First observed in Europe in 2008, Rare Disease Day was established by Eurordis, the European Rare Disease Organisation.
VNS
TUESDAY, March 1 2016(http://english.vietnamnet.vn/fms/society/151840/treatment-of-rare-diseases-in-vn-is-expensive.html)
