Dr. Hà Anh Đức, Director of the Medical Services Administration, Ministry of Health, speaks at the event. — VNS Photo Thanh Hải

HÀ NỘI — Tackling rare diseases head-on, health experts gathered in Hà Nội on Tuesday to push for stronger diagnosis, treatment and management across Việt Nam. The seminar, jointly organised by the Ministry of Health and the Việt Nam Medical Association, marks a significant move in rolling out the 'National Action Plan on Rare Disease Management 2025-2026.'

President of the Việt Nam Medical Association Nguyễn Thị Xuyên emphasised the ongoing commitment 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."

A key outcome of the seminar was the launch of the Steering Committee for strengthening rare disease management in Việt Nam. This body will go beyond offering policy advice, taking charge of directing, coordinating and monitoring the national action plans to ensure meaningful progress.

The Ministry of Health reports that globally over 300 million people suffer from between 6,000 and 7,000 rare diseases – affecting 3.5 to 5.9 per cent of the world’s population. Việt Nam’s augmented efforts signal hope for patients whose conditions have long been overlooked.

In Việt Nam, there are approximately 100 rare diseases affecting around six million people. However, the diagnosis and treatment of rare diseases still face many difficulties due to a lack of information, medical experts, and effective treatment methods.

Many people with rare diseases experience 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.

At the event, experts called for greater efforts to raise awareness of rare diseases and to develop policies to support and facilitate their diagnosis and treatment in Việt Nam.

Delegates also focused on discussing and sharing international experiences in rare disease management, such as building a list of rare diseases and establishing financial mechanisms for rare disease treatment drugs to support patients in Việt Nam.

At the event, the health ministry also announced the Action Plan for Rare Disease Management in Việt Nam for the period 202526. The plan aims to develop, complete and effectively implement policies for rare disease management, review legal documents in the field, identify shortcomings for timely amendment and improvement and innovate dissemination and communication efforts to raise awareness among the public and medical staff about rare diseases.

The plan sets out key tasks, including perfecting institutions in the field of rare disease management, issuing a list of rare diseases, updating standard guidelines on diagnosis, treatment and management of some rare diseases and developing a circular to amend and update the list of rare drugs. It will also promote communication to raise public awareness of rare diseases, scientific research and international cooperation to support and improve capacity for management and treatment.

Director of the Medical Services Administration, Ministry of Health, Dr Hà Anh Đức: "The development and implementation of the National Action Plan on rare disease management is an important and urgent task. We will continue to make efforts to ensure that these activities are carried out effectively and bring practical benefits to the people."

The seminar was not only an opportunity for leading experts to share their experiences and knowledge but also a chance to discuss and propose practical solutions to improve the quality of management, diagnosis and treatment of rare diseases in Việt Nam. — VNS