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Disease Management Awareness Dr Atul Mohan Kochhar, CEO, NABH highlights that he last two decades have seen the emergence of new therapies for a few rare disorders which previously had no hope of survival. By using innovative techniques and advanced scientific technology, researchers have developed novel drugs which are showing miraculous results. Yet by actively involving patients in their care, research, and advocacy efforts, we can unlock a new era of hope and progress in rare disease management For individuals living with rare diseases, the journey is often fraught with isolation, frustration, and limited treatment options. A significant public health challenge in India is the presence of around 450 rare diseases, impacting a substantial portion of the pediatric population. These debilitating conditions, affecting less than one in every thousand individuals, are estimated to contribute to 50 per cent of new cases in children, tragically responsible for 35 per cent of deaths before the age of one. This burden continues through childhood, with 10 per cent and 12 per cent of fatalities occurring between the ages of one to five and five to fifteen, respectively. Common examples include Haemophilia, Thalassemia, and Muscular Dystrophies, highlighting the diverse nature of these illnesses. As defined by the World Health Organization, these rare diseases often present lifelong challenges, demanding ongoing medical attention and support. If we look at the global statisti...

Disease Management Awareness Dr Atul Mohan Kochhar, CEO, NABH highlights that he last two decades have seen the emergence of new therapies for a few rare disorders which previously had no hope of survival. By using innovative techniques and advanced scientific technology, researchers have developed novel drugs which are showing miraculous results. Yet by actively involving patients in their care, research, and advocacy efforts, we can unlock a new era of hope and progress in rare disease management For individuals living with rare diseases, the journey is often fraught with isolation, frustration, and limited treatment options. A significant public health challenge in India is the presence of around 450 rare diseases, impacting a substantial portion of the pediatric population. These debilitating conditions, affecting less than one in every thousand individuals, are estimated to contribute to 50 per cent of new cases in children, tragically responsible for 35 per cent of deaths before the age of one. This burden continues through childhood, with 10 per cent and 12 per cent of fatalities occurring between the ages of one to five and five to fifteen, respectively. Common examples include Haemophilia, Thalassemia, and Muscular Dystrophies, highlighting the diverse nature of these illnesses. As defined by the World Health Organization, these rare diseases often present lifelong challenges, demanding ongoing medical attention and support. If we look at the global statisti...