About Us

World Without GNE Myopathy (India) is a registered charitable trust head quartered in New Delhi, India. It came into being in May 2015. It has been set up to support the activities of GNE Myopathy International and to help people suffering from rare genetic disorders, including through scientific and clinical research.

Our Board of Trustees

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ALOK BHATTACHARYA

Alok is a Professor in the Schools of Life Sciences & Computation and Integrative Sciences at Jawaharlal Nehru University, New Delhi. He has contributed in number of areas including biology of the parasite Entamoeba histolytica, computational genomics and microRNAs in cancer. He has been instrumental in starting an interdisciplinary computation biology teaching and research program in JNU. After his daughter's diagnosis with GNE Myopathy he has been involved in various research efforts to improve the scientific understanding of rare diseases and GNE Myopathy.

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SUDHA BHATTACHARYA

Sudha is a Professor of Molecular Biology at the Jawaharlal Nehru University, New Delhi. She has been teaching and researching in the areas of Molecular Parasitology and gene regulation for over thirty years. After her daughter was diagnosed with GNE Myopathy she has been involved in research efforts to understand GNE Myopathy and work towards possible cures.

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RAM RAMASWAMY

Ram Ramaswamy (Ph. D. Princeton) is Professor in the Schools of Physical Sciences, and Computational and Integrative Sciences at the Jawaharlal Nehru University, New Delhi where he has taught since 1986.His scientific contributions are mainly in the area of dynamical systems, in the study of nonlinear dynamics and chaos. He has been elected to the Indian National Science Academy, as well as the Indian Academy of Sciences, Bangalore.

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SHILPI BHATTACHARYA

Shilpi was diagnosed with GNE Myopathy in the year 2009 aged 27 years. She is a lawyer by profession and has previously worked as a securities lawyer for a British law in Singapore. She received a Ph.D. degree in 2016 from Erasmus University Rotterdam in the Netherlands in the field of Competition Law. She is currently an Assistant Professor of law at O.P. Jindal Global University in India and devotes her free time to patient advocacy for GNE Myopathy.

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KALYANI MENON SEN

KALYANI MENON SEN is a feminist researcher and activist whose has been working for over twenty five years on issues of women's rights, particularly the impacts of neoliberal economic policies on women. She is one of the national convenors of WSS (Women Against Sexual Violence and State Repression), an independent non-funded activist group, and has researched, written and campaigned on issues of violence against women, particularly state violence and its linkage with economic policies. Kalyani is also a member of Gender At Work, an international collective of practitioners working on gender issues in organisational settings. She serves as an external member on committees for prevention of sexual harassment in Ambedkar University, the School of Planning and Architecture and the Patent Office in Delhi. She is a member of the Governing Body of AADI and is a long-time advocate for an intersectional and rights-based approaches to disability issues.

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K K RAI

K.K. Rai is a Senior Advocate based in Delhi. Apart from practicing law, he works for legal empowerment and primary education. He is on the Executive Committee of MARG working for legal awareness and policy development. His initiatives have led to revival of several defunct Basic Schools in Bihar. He has also initiated projects to provide medical facilities in rural India.

Scientific Advisory Committee

One of the major objectives of WWGM is to promote research that will lead to finding cure for GNE Myopathy and other rare genetic disorders in the shortest possible time. In order to achieve this, a Scientific Advisory Committee (WWGM-SAC) has been constituted that will formulate policies and oversee their implementation. WWGM-SAC members are eminent scientists with significant contributions in both basic and clinical sciences. The members also have extensive experience in formulating and implementing policies at the national level. See more..