Prassana Shirol (left), his wife Sharadha and their daughter Nidhi (centre). His daughter’s hours-long treatments for a rare, lifelong disease led to Shirol setting up rare disease centres in public and private hospitals in India. Photo: courtesy of the Shirol family
Prassana Shirol (left), his wife Sharadha and their daughter Nidhi (centre). His daughter’s hours-long treatments for a rare, lifelong disease led to Shirol setting up rare disease centres in public and private hospitals in India. Photo: courtesy of the Shirol family
Wellness

Rare disease hero: Indian dad whose daughter suffers from Pompe has done wonders for similar kids across the country

  • Prasanna Shirol used his experience accompanying his daughter for lengthy medical treatments to help establish rare disease centres in hospitals across India
  • Like many rare disease advocates, he wants a national policy for rare diseases to fund genetic counselling for high-risk parents, treatment and supportive care