Vietnam has about 6 million people with rare diseases.

(Dan Tri) - In Vietnam, 1 in 15 people are affected by rare diseases. However, diagnosis and treatment of the disease still face many difficulties due to lack of information and effective treatment methods.

On the afternoon of September 16 in Hanoi, the Ministry of Health coordinated with the Vietnam Medical Association to organize a scientific seminar to deploy the "National Action Plan on Rare Disease Management 2025-2026".

There is currently no unified definition of rare diseases, which is basically based on the number of people affected. Of these, 80% are congenital diseases, the rest are metabolic, hematological, immune, neurological and cancer disorders.

According to statistics, there are currently more than 300 million patients in the world suffering from about 6,000 rare diseases, accounting for about 3.5-5.9% of the world's population.

Associate Professor, Dr. Nguyen Thi Xuyen, President of the Vietnam Medical Association, spoke at the event (Photo: Tran Minh).

In Vietnam, 1 in 15 people are affected by rare diseases, equivalent to 6 million people affected by rare diseases.

However, the diagnosis and treatment of rare diseases remains difficult due to lack of information, lack of experts and lack of effective treatments. Many people with rare diseases face late diagnosis, improper treatment and high treatment costs.

This situation puts people with rare diseases at a disadvantage and poses a major challenge to the health system, requiring special attention from authorities and the medical community.

Speaking at the seminar, Associate Professor, Dr. Nguyen Thi Xuyen, President of the Vietnam Medical Association, said that the management of rare diseases in our country still faces many challenges. Diagnosis is often slow, professional resources are lacking and uneven, while the need for treatment is increasing.

“The Vietnam Medical Association is committed to continuing to accompany the Ministry of Health and relevant agencies in implementing rare disease management activities. We hope that through this discussion, policies and action plans will be effectively implemented, contributing to improving the quality of life of people with rare diseases,” Associate Professor Xuyen emphasized.

A case of a child with a rare disease, with the cost for each treatment in Ho Chi Minh City being very high (Photo: Hoang Le).

Dr. Nguyen Trong Khoa, Deputy Director of the Department of Medical Examination and Treatment Management (Ministry of Health), added that the department will soon issue a list of rare diseases in Vietnam. The goal is to accept 30-40 diseases by the end of 2025 and issue a list of rare diseases by 2026.

On this occasion, the Ministry of Health also issued the "National Action Plan on Rare Disease Management for the 2025-2026 period" and launched the Steering Committee to strengthen rare disease management in Vietnam.

The plan sets out key tasks including perfecting institutions in the field of rare disease management such as issuing a list of rare diseases, updating standard guidelines on diagnosis, treatment and management of some rare diseases, developing a Circular to amend and update the list of rare drugs; promoting scientific research and international cooperation to support and improve capacity for management and treatment of rare diseases.

Source: https://dantri.com.vn/suc-khoe/viet-nam-co-khoang-6-trieu-nguoi-mac-benh-hiem-20250916203130711.htm