Despite recent advances in genetic diagnosis and treatment, millions of Indians with rare diseases remain trapped between a healthcare system that cannot diagnose them and a policy framework that cannot treat them.
Alok Bhattacharya is a retired scientist from Jawaharlal Nehru University, New Delhi, and currently an Honorary Professor at Ashoka University, Sonipat. He is a co-founder of World Without GNE Myopathy, a foundation advocating for research into treatments for rare genetic diseases. Through the foundation, he has supported a natural history study of GNE Myopathy at NIMHANS, Bengaluru, and is actively involved in mRNA therapy research with TIGS, Bengaluru.