Prof. Dr Trần Văn Thuấn, Deputy Minister of Health, Chief of the National Steering Committee for Rare Disease Management, speaks at the event. — VNS Photos Thanh Hải

HÀ NỘI — Health experts called for a stronger commitment to support the rare disease community in Việt Nam at a meeting in Hà Nội on Saturday.

The event was jointly organised for the first time in Việt Nam by the Medical Services Administration (MSA) under the Ministry of Health and the Health Economics Research and Assessment Centre to commemorate World Rare Disease Day (February 28).

The first national ceremony commemorating World Rare Disease Day marks a historic turning point in healthcare management, demonstrating the health sector's profound attention and strong commitment to the rare disease community in Việt Nam.

Following the issuance of the "National Action Plan on Rare Disease Management 2025-2026", this year's ceremony is not only a voice responding to the global heartbeat but also a concrete action to materialise the message "Leave no one behind".

Speaking at the event, Prof. Dr Trần Văn Thuấn, Deputy Minister of Health, Chief of the National Steering Committee for Rare Disease Management, emphasised: “The first national ceremony held today is the strongest testament to the commitment of the Vietnamese health sector to the rare disease community. The urgent completion and promulgation of the Rare Disease List and finding a breakthrough, sustainable financial mechanism for orphan drugs are among the important tasks of the health sector, aimed at ensuring equity in healthcare for all citizens.”

Statistics show that there are currently over 300 million patients worldwide suffering from about 6,000 types of rare diseases, accounting for roughly 3.5 – 5.9 per cent of the global population. In Việt Nam, one in 15 people is affected by a rare disease, equivalent to 6 million people.

Delegates join the handprint ritual, showing their commitment to stand side by side with rare disease patients in their battle against illnesses. — VNS Photos Thanh Hải

To address this situation, in 2025, the Ministry of Health issued a National Action Plan and established the National Steering Committee for Rare Disease Management in Việt Nam.

Many practical activities have been implemented to assess the current situation, improve diagnostic and treatment capacity, and step by step develop support policies for people living with rare diseases in Việt Nam.

However, this journey still faces numerous challenges, including the limited capacity for in-depth diagnosis and testing at lower levels, gaps in the legal framework regarding rare diseases, and the financial burden on families and people with rare diseases. This event is an opportunity for policymakers and medical experts to jointly review these difficulties, thereby turning challenges into concrete actions and policies.

At the event, the MSA presented in detail the plan and criteria for developing the draft List of Rare Diseases in Việt Nam. The early promulgation of an official list is considered the "key" to opening up subsequent support policies.

Participants also discussed topics on developing a rare disease list and financial solutions for orphan drugs in Việt Nam. They also shared ideas and discussed risk-sharing models, oriented the expansion of the health insurance fund, and mobilised social resources to ensure patients have the opportunity to access advanced therapies at reasonable costs.

The event marked a long stride for the Vietnamese health sector, transitioning from action plans to highly practical solutions, lighting up hope for a brighter future for the rare disease community in Việt Nam. — VNS