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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...

Sudha Bhattacharya
Mar 238 min read
437 views
2 comments


Turning A Bedroom Into The Safest Home ICU
How two sisters mastered the technology of critical care to help their mother live with ALS. Darji was a profoundly devout man. His piety...

Sudha Bhattacharya
Sep 21, 202437 min read
724 views
9 comments


A Dad Takes Under His Wings All ‘Silent Angels’ of Rett Syndrome
Arising from the Doom of 'No Diagnosis No Treatment', here is the story of how Samir Sethi persevered.

Sudha Bhattacharya
May 1, 202419 min read
1,104 views
0 comments


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
1,527 views
7 comments


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
1,050 views
1 comment


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

Sudha Bhattacharya
Dec 1, 20226 min read
1,342 views
1 comment


A Parents Group saving the lives of infants born with Rare Metabolic Disease : Part 2
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...

Sudha Bhattacharya
Oct 26, 20228 min read
396 views
3 comments


A Parents Group saving the lives of infants born with Rare Metabolic Disease: Part 1
The story of Vikas and Poonam Bhatia. Vikas and Poonam Bhatia. Metabolic acidosis, arterial blood gas, pyruvate dehydrogenase…. words...

Sudha Bhattacharya
Oct 14, 20227 min read
842 views
3 comments


How parents, who refused to accept defeat, pushed the frontiers of Rare Disease Research
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...

Sudha Bhattacharya
Sep 14, 20227 min read
1,868 views
12 comments
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