On the afternoon of January 13, 2026, Vietnam National Children’s Hospital (NCH) in Hanoi formally welcomed and held working sessions with a delegation of leading international experts to exchange experiences and set strategic directions for the development of newborn screening (NBS) programmes, as well as the management and treatment of rare diseases and metabolic disorders in children.
The international delegation brought together distinguished professors and specialists from a diverse range of countries and territories, including the United States, Bangladesh, India, Indonesia, Laos, Mongolia, Myanmar, Nepal, Pakistan, the Philippines, Australia, and China, all of whom are actively engaged in newborn screening, genetics, metabolism and public health research.
At the opening of the programme, representatives from the hospital’s International Cooperation Department provided an overview of the institution’s mission, core functions, operational scale and key strengths.
In his welcome address, Prof. Tran Minh Dien, Director of Vietnam National Children’s Hospital, expressed deep gratitude to the visiting experts for their time, dedication, and support in advancing newborn screening and the management and treatment of rare and metabolic diseases in Vietnamese children. He underscored the hospital’s steadfast commitment to early detection, treatment, and long-term management of rare conditions, while highlighting the challenges posed by limited resources amidst growing demand for specialized pediatric care nationwide.
Sharing with the delegation, Assoc. Prof. Vu Chi Dung, Director of the Endocrinology, Metabolism, Genetics and Molecular Therapy Centre at VNCH, noted that the hospital’s NBS programme has been in operation since the early 2000s, with significant contributions from international experts such as Dr. Carmencita Padilla of the Philippines and Prof. Bradford Therrell Jr. of the University of Texas Health Science Center at San Antonio, USA.
According to VNCH data, national screening coverage for common disorders such as congenital hypothyroidism and G6PD deficiency currently stands at approximately 55–58 per cent. At the hospital alone, around 24,000 newborns are screened annually using tandem mass spectrometry (MS/MS), with an additional 16,000 screened for congenital hypothyroidism and congenital adrenal hyperplasia, resulting in an overall coverage rate exceeding 60 per cent — a marked improvement since the programme’s inception.
VNCH is steadily expanding its screening panel to include additional conditions, including a pilot programme for spinal muscular atrophy (SMA) screening at Hanoi Obstetrics Hospital that aims to reach approximately 40,000 newborns each year.
During in-depth discussions, both sides emphasized that screening is only the first step; comprehensive follow-up, management and treatment of complex metabolic disorders require integrated systems and substantial resources. Experts noted that delayed diagnosis and management can lead to rapid deterioration or fatal outcomes in affected children.
To improve long-term care, VNCH is developing a network of satellite hospitals and implementing training and technical transfer programmes to enhance the capacity of lower-level health facilities. However, treatment costs — particularly for enzyme replacement therapies — remain a significant burden, with weekly expenses for some patients reaching as high as USD 200,000.
Several international experts shared their country’s long-term strategies, including a 20-year roadmap from the Philippines to integrate ten metabolic and lysosomal storage disorders into national health insurance coverage through phased implementation.
The working session concluded with a shared commitment to strengthen cooperation, with the goal of positioning National Children’s Hospital as a regional hub for newborn screening, expanding coverage toward universal access, and supporting screening initiatives in neighboring countries such as Laos and Cambodia.
