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Nidhi with her parents, Prasanna and Sharada

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

Sudha Bhattacharya

Mar 2, 202538 min read

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Where there is a will, there is a ‘Champion’.

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..