Rare Lives

Suno India

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.

May 06, 2020

कोरोनावायरस से दुर्लभ रोगी कैसी बचें

ये पॉडकास्ट भारत सरकार,आर्गेनाईजेशन फॉर रेयर डीज़ीइस इंडिया और विश्व स्वास्थय संगठन दिशा-निर्देश पर आधारित है। यह उनके लिए लाभयदायक है जो आश्रित व्यक्तियों की देख भाल कर रहे हैं या दुर्लभ रोगों से झूंझ रहे हैं ।...

5 mins

Sep 27, 2019

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 ins...

39 mins

Aug 28, 2019

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, we get a glimpse of the distance...

23 mins

Jul 29, 2019

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, but geneticists and the...

33 mins

Jun 28, 2019

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 rare disease, how his family became close-knit as...

36 mins

May 28, 2019

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 bodied woman Sangeeta Goyal and her choice...

24 mins

Apr 28, 2019

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, how he turned his struggle into a strength and what...

19 mins

Mar 28, 2019

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.

22 mins

Feb 28, 2019

Introducing 1 in 20000

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 limited and restricted to only those who get impacted? Th...

26 mins