Rare Disease

Applying management principles to Rare Diseases: How a dad navigated his daughter through Pompe Disease and paved the way for many.

Nidhi with her parents, Prasanna and Sharada Long before the professional management degree became a passport to success, the world of...

Mar 238 min read

How two sisters mastered the technology of critical care to help their mother live with ALS. Darji was a profoundly devout man. His piety...

Sep 21, 202437 min read

Arising from the Doom of 'No Diagnosis No Treatment', here is the story of how Samir Sethi persevered.

May 1, 202419 min read

Ambrish and Nikita Kapadia Physician-scientists are perhaps some of the busiest people on the planet. With heavy clinical duties on top...

Jun 13, 202322 min read

This is the story of how a family dodged the severely debilitating rare disease - Spinal Muscular Atrophy

Feb 26, 202317 min read

A new cellular model of GNE Myopathy reveals disease mechanism and holds promise for testing potential therapies. Jason Doles & Team at...

Dec 1, 20226 min read

The story of Vikas and Poonam Bhatia. Sambhav Bhatia In Part 1 we saw how Vikas and Poonam lost their two babies Chahak and Lakshya to...

Oct 26, 20228 min read

The story of Vikas and Poonam Bhatia. Vikas and Poonam Bhatia. Metabolic acidosis, arterial blood gas, pyruvate dehydrogenase…. words...

Oct 14, 20227 min read

The world doesn’t care when a disease is rare, while a parent doesn’t care, that the disease is rare . Over the ages, it’s parents who...

Sep 14, 20227 min read