Research

On March 7th, DTU and the Vietnam National Children's Hospital held a seminar on Rare Diseases and a presentation on the “Hear Our Stories” book. Dr. Vu Chi Dung, Head of Endocrinology, Metabolism and Genetics at the Vietnam Children’s Hospital, Associate Professor Nguyen Ngoc Minh, the DTU Vice-Provost of Health Sciences, representatives of local hospitals, universities and colleges, and DTU lecturers and students of Health Sciences attended.

According to recent statistics, there over sixty thousand people suffering from about seven thousand rare diseases. In 2013, the Vietnam National Children's Hospital first organized a special Rare Disease Day. 

“This informative seminar on Rare Diseases is important for both lecturers and students in Health Sciences at DTU,” said Associate Professor Dr. Nguyen Ngoc Minh, Vice-Provost of Health Sciences. “We were able to learn much more about diagnostic methods, cures and the challenges of detecting and treating rare diseases.”

Dr. Dung presented some basic information on rare diseases, which affect only a small percentage of the population but pose a significant problem in diagnosis and treatment. 80% of the diseases are genetic, present throughout the patient’s life, even if symptoms are not immediately apparent. They include congenital adrenal hyperplasia, Duchenne muscular dystrophy, neonatal diabetes, propionic and isovaleric acidemia and Turner’s syndrome.

  

Few medical practitioners understand enough about them to make an early diagnosis, despite the fact that several new advanced treatment methods have already been discovered, such as enzyme replacement, stem cell therapy, gene therapy and the development of specific procedures to detect, diagnose and treat each of the rare diseases.

The physicians introduced a new book titled “Hear Our Stories”, conceived and published by staff and physicians at the Vietnam National Children's Hospital Department of Endocrinology, Metabolism and Genetics and for parents of children suffering from rare diseases, to provide them with a broader understanding and more concise information about the medical aspects of rare diseases.

With the motto “The more they understand about rare diseases, the more chance the parents of patients will have better lives”, the organizers of the seminar hope that the latest information from leading practitioners in the field of rare diseases will make a significant contribution to increasing awareness and bringing families of patients together to share their experiences.