Around 6mn Vietnamese live with rare diseases, diagnosis takes 7 years on average

The Vietnamese health ministry’s Department of Medical Service Administration (MSA) marked Rare Disease Day on Saturday with a meeting and policy workshop in Hanoi, co-hosted with the Health Economics Research and Assessment Center (HERAC), focusing on building a national rare disease list and financing solutions for orphan drugs.

About 6 million Vietnamese live with rare diseases

About 6 million people in Vietnam are estimated to live with rare diseases, Deputy Minister of Health Tran Van Thuan said, noting that roughly 58 percent are children.

Nearly 30 percent of the affected children die before age five due to late diagnosis or lack of access to appropriate treatment.

“These figures show rare diseases are not limited to individual specialties but must be treated as a national health policy priority,” Thuan said.

This year’s global theme, 'More Than You Can Imagine,' highlights that while each disease may be rare, the need for early diagnosis, timely treatment, and a full life is not, the ministry said.

Vietnam plans to finalize a science-based national rare disease list aligned with international experience while being tailored to local conditions.

The ministry is also working on sustainable financing for orphan drugs, including risk-sharing models, price negotiations, and coordination with Vietnam Social Security.

Authorities also aim to expand rare disease expertise through reference centers, wider genetic testing, standardized treatment protocols, workforce training, and the development of a national database.

Rare disease diagnosis takes 7 years on average

It takes an average of seven years to diagnose a rare disease, often after two to three misdiagnoses, a representative of the MSA said at a recent workshop.

About 7,000 rare diseases have been identified globally, with roughly 72 believed to be genetic.

Vietnam has yet to adopt an official definition of rare diseases. Under current regulations, they are generally understood as conditions affecting no more than 0.05 percent of the population at a given time, including genetic disorders, congenital conditions, cancers, autoimmune and infectious diseases.

Nguyen Trong Khoa, deputy head of the MSA, said the agency is working with experts to finalize a national rare disease list based on scientific criteria and Vietnam’s realities.

A provisional list of nearly 1,300 rare diseases has been compiled, with a national list expected to be issued in October.

“This will serve as a key foundation for standardized treatment guidelines and more sustainable support for rare disease patients,” Khoa said.

Participants at the workshop discussed risk-sharing models, expanding health insurance coverage and mobilizing social resources to improve access to advanced therapies at reasonable costs.