1 in 20000

By Avantika Shrivastava

There are more than 7,000 documented rare conditions in the world. While there is no known cure for some conditions, where there is a cure (or maintenance through medicines is possible), the cost of medication is exponentially high to bear. This podcast will focus on the status of rare conditions in India, which has been talked about very little in Indian society. It will be a one-of-its-kind attempt in India to document the gamut of challenges and achievements of people with rare conditions and will open a constructive dialogue on what can be done. This is important because an estimated 1 in 20 Indians are affected by a rare disease. The series will bring out the human face behind rare conditions – the patients, the families, caregivers, doctors, activists and geneticists working to improve life for people with rare conditions.

Episodes

Awaiting Change

Awaiting Change

This special episode of 1 in 20,000 features  George Estreich, author of ‘Fables and Futures:  Biotechnology, Disability, and the Stories We Tell Ourselves’. In a candid conversation, Estreich discusses the…

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A long wait

A long wait

The final episode of 1 in 20000 touches upon the legal rights of rare disease patients. In this conversation with Advocate Ashok Agarwal, who practices in the Delhi High Court,…

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The Gene Story

The Gene Story

Genes are the building blocks of our bodies and are responsible for the diversity of physical and other characteristics found in humans. They are incredibly complex for us to understand,…

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A Father’s Journey

A Father’s Journey

A family is changed forever when a loved one is diagnosed with a rare disease. In this episode, Mr Iftikhar Zia discusses his experience of raising a son with a…

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An equal partner

An equal partner

We all want empathy, understanding and love, but how do these play out for people with rare diseases? In this episode, listen to a seldom heard perspective of an able…

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Living Rare

Living Rare

What is it like to live with a rare condition? In this episode, Mr Vipul Goyal gives a peek into his world, the time he was diagnosed with muscular dystrophy,…

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Care for a rare

Care for a rare

In this episode of 1 in 20000 Avantika speaks to Mr. Prasanna Shirol, the founder of ORDI, a rare disease patient care and advocacy organization. Transcription: Download Illustration by Priyanka…

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Introducing 1 in 20k

Introducing 1 in 20k

An estimated 100 million Indians are said to suffer from any of the over 6000 rare diseases found in the world. So how is it that the conversation is so…

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