Representative of Novartis Vietnam receives a Certificate of Merit from the Ministry of Labor, War Invalids and Social Affairs (MOLISA) for the company's efforts in children’s health in 2023.
Novartis Vietnam has been awarded a Certificate of Merit by the Ministry of Labor, War Invalids and Social Affairs (MoLISA) for the company's efforts in children’s health protection in 2023.
This recognised Novartis Vietnam’s contributions through a project to raise awareness and bolster support for children with spinal muscular atrophy (SMA) in Việt Nam.
The SMA project is a collaboration with the National Fund for Vietnamese Children (NFVC), with a budget exceeding VNĐ8.1 billion, for three years.
The project focuses on four key objectives, including raising community awareness about SMA, enhancing the diagnostic and treatment skills of medical staff, supporting genetic testing for high-risk children and conducting research on the disease in Việt Nam, and advocating for long-term, sustainable support policies for children with SMA.
After more than one year of implementation, the project has already marked significant progress. This includes collaboration with the Vietnam Pediatric Association to develop materials aimed at increasing awareness of spinal muscular atrophy symptoms among the community and healthcare professionals.
A media campaign was launched on International Rare Disease Day at the National Children’s Hospital and Children’s Hospital 1 to further educate about spinal muscular atrophy. Specialised workshops were conducted for the national network of healthcare professionals, focusing on spinal muscular atrophy.
A community education programme was initiated, emphasising physiotherapy and nutrition for children affected by spinal muscular atrophy, to enhance disease awareness and guide home-based pediatric patient care. An advisory board meeting was held with top pediatric experts to discuss the comprehensive management of spinal muscular atrophy and agree on future actions, ranging from the introduction of the national treatment guidelines for spinal muscular atrophy to the execution of a screening program in 2024.
In the next two years, Novartis Vietnam will continue its educational activities and knowledge enhancement initiatives for effective disease management. The company will also work with the Vietnamese health sector to establish standards of care for SMA patients, support patients in accessing specific treatments quickly and sustainably, and strive to minimize the severe consequences of the disease and improve the quality of life for patients and the community.
Global statistics indicate that over 300 million individuals are currently living with approximately 6,000 rare diseases, accounting for about 3.5 - 5.9 per cent of the world’s population. A significant 72 per cent of these diseases are related to genetic transmission, and more than 70 per cent of rare diseases manifest symptoms in childhood.
According to the World Health Organisation, in Việt Nam, one in every 15 individuals suffers from a rare disease, equating to around 6 million people. Alarmingly, 58 per cent of these cases are children, and tragically, up to 30 per cent of children with rare diseases do not survive past the age of five.— VNS