The Team

Alok Bhattacharya (Managing Trustee) is currently a Professor and Head of the department of biology at Ashoka University, Sonipat, Haryana. Formerly, he was a professor of Life Sciences at Jawaharlal Nehru University, New Delhi. He has contributed in a number of areas including the biology and genomics of the parasite Entamoeba histolytica, computational genomics and microRNAs. He has been instrumental in starting interdisciplinary computation biology teaching and research programs at JNU. He is a fellow of the Indian National Science Academy and winner of the SS Bhatnagar prize (the highest honour in science conferred by the Indian government) for his scientific contributions. After his daughter’s diagnosis with GNE Myopathy he has been involved in various research efforts to improve the scientific understanding of rare diseases, finding a therapy for GNE Myopathy and rare disease policy.

Sudha Bhattacharya is an INSA Senior Scientist at Ashoka University, Sonipat. She was formerly Professor of molecular biology at the School of Environmental Sciences, Jawaharlal Nehru University, New Delhi. She has taught, and extensively researched in the area of gene expression and genome organization. She is an elected fellow of the major Indian national science academies. She has received a number of research awards for her scientific contributions including the Rockefeller Biotechnology Award, Robert McNamara Award for Economic Development and Fogarty International Research Collaboration Award. Currently, her research focus is on rare genetic disorders, in particular to promote research towards understanding and treating GNE myopathy and other rare neuromuscular genetic disorders in India.

KALYANI MENON­SEN (Trustee) is a feminist researcher and activist who has been working for over twenty-­five years on issues of women’s rights, particularly the impacts of neoliberal economic policies on women. She has written and campaigned on issues of violence against women, particularly state violence.She is a Senior Associate with Gender At Work, an international collective of feminist practitioners working on gender equality in institutional and organisational settings.

Shilpi Bhattacharya is a Professor of Law at O.P. Jindal Global University. Shilpi was previously an associate at the British law firm Linklaters LLP and admitted to practise at the New York bar. Shilpi received the Erasmus Mundus Fellowship to complete a Ph.D. in Law and Economics as part of the European Doctorate in Law and Economics. Her research areas are competition law, law and economics and rare disease policy. Shilpi was diagnosed with GNE myopathy in 2009.