Rare Lives
تفاصيل القناة
Rare Lives
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...
الحلقات الحديثة
19 حلقة
Advocating for a rare cause
This episode features a parent who has lost three infant children to a rare illness linked to inborn errors of metabolism caused by enzyme deficiency....
What does a rare family look like?
The life of a rare individual's parent is unlike anybody else’s. Mostly, parents are their children’s primary caregivers till late in the child’s life...
Climbing the job ladder with a chronic rare illness
Adulthood is when one should be able to live independently; when one can earn a living and become self-sufficient. But, should a rare individual have...
Learning the hard way
Education is the foundation on which a person can build their life. But for rare individuals, being able to go to school or college is not a guarantee...
Quest for blood- How COVID-19 pandemic hurt children with thalassaemia
Thalassaemia is a rare blood disorder which causes the blood to have less haemoglobin. Children suffering from thalassemia need regular blood transfus...
Breaking free from the emotional costs of a rare disease
Over the years, the importance of taking care of one’s mental health has gained more acceptance. In 2020, with the breakdown of more traditional and p...
The pandemic unravels India’s weak disability support system
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Why it is not easy to diagnose a rare disease
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The impact of COVID-19 & lockdown on people with rare diseases
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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 dy...
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.
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...