There are more than 8,000 documented rare diseases in the world. An estimated 70-90 million Indians are said to be rare individuals. Most rare diseases are incurable, and where there are cures, the costs are prohibitive for patients and families. Rare diseases can also lead to disabilities. Yet why is that there is little public awareness of rare diseases?

This #RareDiseaseDay2021, hear the stories of people who have been part of the 1 in 20,000 podcast series. Launched in 2019, the series offers a window into the lives of rare individuals, their search for proper medical diagnosis, treatment, and well-being. Rare Lives is the second season of the 1 in 20,000 podcast series.

This series has sought to go beyond the stereotypes associated with rare individuals, who often end up being statistics in public conversation. For instance, it is said that the prevalence of a rare illness – FSHD – is 1 in 20,000 children. The series, however, dives into the perspectives, joys, challenges and motivations of rare individuals and their support systems. The upcoming session is a rare chance to see the human face behind the podcast episodes. They represent countless patients, families, caregivers, doctors, activists, and geneticists working to improve the life of every person who is living with a rare disease in India.

For this episode of The Suno India show, Avantika Shrivastava spoke with Vipul Goyal, Shambhavi Ravishankar, Iftikhar Zia and Dr. Priyanshu Mathur.

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