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The GNE Dialogues
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Where there is a will, there is a ‘Champion’.
Symptoms of rare diseases often creep up quietly, rather than arriving with the brutal shock of a sudden lifestyle upheaval. The change is gradual—unyielding and relentless in its impact. One moment, I was darting around the globe, making things happen with agility and speed; the next, it felt as though someone had chained a 1 kg weight to my ankle..

Shubhra Sinha
Feb 195 min read


From the world of business and glamour to that of rare genetic disease: A Mom’s resolute journey as India’s torchbearer of Prader-Willi Syndrome
Ansh and his mother Shikha Shikha’s family migrated from Rajasthan to Kolkata several generations ago and set up a flourishing textile business. She had always seen a life of plenty, although tempered with discipline and hard work. She was gifted with great physique, charming looks, and a sharp mind, all of which floored young Vikram whom she met while still in high school. After graduation, Shikha landed a job in a garment export company. She handled the competitive Europea

Sudha Bhattacharya
Dec 28, 202526 min read


Duchenne Muscular Dystrophy: How a self-taught dad is using state-of-the-art science to save his son
Ambrish and Nikita Kapadia Physician-scientists are perhaps some of the busiest people on the planet. With heavy clinical duties on top...

Sudha Bhattacharya
Jun 13, 202322 min read


Spinal Muscular Atrophy : From being denied school admission to reaching the portals of IIT Kanpur
This is the story of how a family dodged the severely debilitating rare disease - Spinal Muscular Atrophy

Sudha Bhattacharya
Feb 26, 202317 min read
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