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MoU signed for treatment of rare diseases

Update: April, 20/2018 - 12:00
The health ministry’s Medical Services Administration and Shire Singapore today sign of a joint Memorandum of Understanding on improving diagnosis, treatment and management of rare diseases in Việt Nam. — VNS Photo Thanh Hải
Viet Nam News

HÀ NỘI — The Medical Services Administration, under the Ministry of Health (MoH), and Shire Singapore Ltd signed a Memorandum of Understanding (MoU) today.

Under the deal, the two parties will collaborate on improving the diagnosis, treatment and management of rare diseases in Việt Nam until 2023.

“Việt Nam has a population of more than 90 million, but only few of the rare diseases have specific treatment. To improve their diagnosis and treatment, there is a need to work with an industry leader to create positive changes for patients in future. This will also facilitate the introduction of ‘orphan drugs’ provision policies in Việt Nam where there is a significant unmet need,” said LươngNgọcKhuê,director of the Medical Services Administration.

The agreement is also expected to help support professional medical education in the country and develop a management programme for rare diseases.

“Haemophilia and Primary Immune Deficiency (PID) are complex rare disorders and require continuous medical research and innovative approach to ensure positive outcome for patients. This MoU is the first-of-its-kind for Shire in Asia Pacific, and we aim to not only shorten the time for diagnosis but also ensure that patients are well supported with adequate access to therapy and management over the course of their life-long conditions,” said Linda Seah, head of Southeast Asia Cluster at Shire.

During the first stage, MoH and Shire will work together to develop a national guideline to improve the quality of diagnostics, treatment and management of Haemophilia and PID as well as to support policy development on rare diseases in Việt Nam.

According to the World Health Organisation, there are approximately 100 rare diseases reported in Việt Nam. It is estimated that almost one in 15 persons, or approximately six million people in the country, suffer from a rare disease. Việt Nam has more than 6,000 haemophilia patients, but only 2,400 have been detected their disease situation, while PID remains common and adversely affects the prognosis of these patients. — VNS

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