Posted on Mar. 21st, 2016 at 10:45am
More than 70 families attended a public education event to learn about the importance of screening for metabolic disorders within the first few days of a newborn’s life.
Under the theme, “Let’s Speak Up for Patients Suffering from Rare Diseases,” Mead Johnson Vietnam and the National Pediatric Hospital in Hanoi came together last month on International Rare Disease Day to sponsor a public awareness campaign about rare diseases.
During the event, some of Vietnam’s leading health care professionals were on hand to educate more than 70 families about rare diseases – also known as orphan diseases – which include congenital metabolic disorders (CMDs). The physicians shared a great deal of information with families and caregivers, including the importance of newborn screenings within the first few days of life, as well as nutritionally managing diagnosed CMDs whenever possible.
According to Le Thanh Hai, PhD, director of the National Hospital of Pediatrics, more than 7,000 different types of rare diseases and 25 different congenital metabolic disorders of amino acids, organic acids and fatty acids exist worldwide.
“Parents lack understanding of scientific information and knowledge of the thousands of rare diseases, which often leads to late diagnosis and management. Many hospitals are restrained by the absence of technical access to diagnose and manage these rare disorders. As a result, the detection and management of rare diseases in Vietnam face many difficulties,” said Professor Hai.
Mead Johnson Vietnam has developed a number of initiatives in this area. Most recently, in mid-2014, it implemented a 5-year project with the National Pediatric Hospital and the Department of Maternal & Child Health entitled, “Raising Awareness of Screening, Diagnosing and Treating Congenital Metabolic Disorders.” This program aims to educate parents about metabolic disorders and train health care professionals to screen for them at birth.
Less than halfway into the five-year effort, more than 700 physicians have been trained nationwide in Vietnam and more than 100 lives of children have been saved.
“For many years, Mead Johnson Vietnam has provided specialized nutrition products to patients living with rare metabolic diseases, as well as co-organized activities, programs and projects to further educate parents and health care professionals about these potentially debilitating disorders. We share the community’s concerns and will continue to help CMD-affected children achieve the best start in life,” said Gift Samabhandhu, general manager of Mead Johnson Vietnam.