Rare Lives

By Suno IndiaSociety & Culture Health & Fitness

Rare Lives episodes

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 ।

पॉडकास्ट में दिया गया ईमेल आई.डी. है: [email protected] ।
वेबसाइट है www.mygov.in ।
See sunoindia.in/privacy-policy for privacy information.
5 min
September 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 inspiration behind his work, his now teenage daughter Laura, who was diagnosed with Down Syndrome and what he has experienced of disability through her. He also shares his thoughts on how social expectations make people with disabilities vulnerable, and what could be done to protect them.

About the book: How new biomedical technologies—from prenatal testing to gene-editing techniques—require us to imagine who counts as human and what it means to belong.
See sunoindia.in/privacy-policy for privacy information.
39 min
August 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 India still has to go on securing a life of dignity for them.
For more stories like this, you can listen on www.sunoindia.in. Also follow us on Facebook, Twitter or Instagram.
See sunoindia.in/privacy-policy for privacy information.
23 min
July 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 scientific community are developing new ways to sequence them, thus determining the exact ways in which genes create life. Everybody is unique, has its own needs, and this is true for the bodies of people with rare conditions too. A whopping 80 per cent of rare illnesses are genetic in nature causing lifelong health complications.

In this episode, Dr Deepanjana Dutta, a genetic counsellor, traces the gene story. She discusses what we know about genes until now and how medical cures are developed. She also shares her experiences of counselling people who have had to face not just medical but social challenges since genetics is little understood in the country and diversity in the body is often unwanted.

For more stories like this, you can listen on www.sunoindia.in. Also follow us on Facebook, Twitter or Instagram.
See sunoindia.in/privacy-policy for privacy information.
33 min
June 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 a result, and the joys they have experienced in spite of chronic challenges.
See sunoindia.in/privacy-policy for privacy information.
37 min
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 of partner who uses a wheelchair. She shares her journey of being a couple, and their trials and joy.
See sunoindia.in/privacy-policy for privacy information.
25 min
April 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 made him contribute to the lives of people with rare conditions. He is currently a co-founder of the Indian Association of Muscular Dystrophy.
See sunoindia.in/privacy-policy for privacy information.
19 min
March 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.
See sunoindia.in/privacy-policy for privacy information.
23 min
February 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? This podcast 1 in 20,000 will answer this and many more questions. On World Rare Disease Day, we are honored to launch India’s first podcast on rare diseases hosted by Avantika Shrivastava.
See sunoindia.in/privacy-policy for privacy information.
26 min

About Rare Lives

From the publisher's feed

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…