There is a concerning lack of awareness and research in India regarding MND (Motor Neuron Disease). Unlike countries like the US, England, Ireland, etc., India does not have an MND registry of MND patients. This means there is not enough :
Funding by the government
Research to understand the Disease
Access to proper treatment
Internationally, there has been important research conducted to understand the disease. There have been exciting developments in the area of gene therapy and medications for MND. However, in India, pharmaceutical companies have not shown interest in the same, due to a lack of awareness of the disease.
MND Trust can help attract the attention of the pharmaceutical industry and the Government and push for better funding, research, and treatment.
To sum up the need of the hour is to:
Spread awareness of the disease.
Establish dedicated multidisciplinary MND clinics to aid early diagnosis and treatment.
Create an MND Trust Registry of MND patients and use it to push for better research and funding.
Dr. Alexander Thomas | President, AHPI
