Ramaiah Muthyala, PhD, Research Associate Professor at University of Minnesota and President and CEO of Indian Organization for Rare Diseases (IORD), discusses the challenges faced by rare disease patients in India.
As Dr. Muthyala explains, rare disease challenges often differ in less developed countries, such as India. In fact, rare diseases were hardly acknowledged by government policies until recently, when a policy for rare disease treatments has led to a slow increase in awareness.
This lack in rare disease awareness and challenges of diagnosis and treatment are due to a variety of factors. Overall, priorities in underdeveloped countries are much different and resources are less. In India specifically, many infectious and more common diseases are prevalent, taking up the focus and medical resources. Additionally, much of the population live in very rural areas, making adequate diagnosis and treatment difficult.
The IORD’s vision is to give rare disease patients equal opportunities to those with more common diseases in India. The organization is working to achieve this goal through raising awareness, advocating for public policy, and promoting treatments, diagnosis, and social services.
Work is also being done to help bring rare disease education into the medical school curriculum in India. Dr. Muthyala expresses hope that this change is implemented within the next couple of years. Additionally, making treatments more affordable is an area of necessity that efforts are currently working towards.
For more information on the IORD and their resources, click here.
To learn more about rare disease advocacy, visit https://checkrare.com/rare-disease-advocacy-2/