Hanoi (VNA) - Health records revealed that Vietnam is home to about 100rare diseases and around 6 million patients, heard a symposium held by theVietnam Medical Association in Hanoi on February 29.

Of the rare diseases in the Southeast Asian nation,58% are found among children, of whom 30% die before they reach the age offive.  

Statistics also showed that 300 million people aroundthe world are living with one of 6,000 identified rare diseases, of which only5% have a Food and Drug Administration (FDA)-approved drug.

Besides, treatment costs for the rare diseases remain highand unaffordable to most of the patients, if there is no financial support from the state or organisations and the society, especially for prolonged treatment.

In Vietnam, patients find it hard to accesstreatment methods due to restricted health insurance coverage for the rarediseases, and some drugs yet to be approved in the country.

Deputy Minister of Health Tran Van Thuan said the Ministry of Health has put in place a number of policies and solutions to better manage the rare diseases. These include forming a task force in 2014, establishing an advisorycouncil on rare disease management, and participating relevant forums withinthe Asia-Pacific Economic Cooperation (APEC) forum and the World HealthOrganisation (WHO).

To deal with challenges to rare disease treatmentand management, he suggested the engagement of the entire political system andsociety, which has proved effective in many countries in the world.

Apart from policy-making, the enforcement of policies playsa crucial role, requiring diverse resources, including internationalcooperation, the official said, speaking highly of the support frominternational organisations and pharmaceutical firms like Takeda, Sanofi,Novartis and Roche over the past time.

On this occasion, the Department of Medical ServiceAdministration under the Ministry of Health signed a memorandum ofunderstanding on cooperation with the four pharmaceutical firms, aiming to improve the qualityof rare disease management and treatment in Vietnam.

Under the MoU, the relevant sides will establish a group ofexperts to supervise guideline implementation at hospitals, coordinate toreview and update the ministry’s standard treatment guidelines, devise drug managementpolicies, and support the building of national database on drugs for rarediseases, among other activities./.