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....
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About
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.
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
Persons with disabilities make up over 2 percent of the Indian population. While not all persons with disabilities are rare individuals, rare diseases...
Parenting a rare child
Being rare is not a death sentence, and nobody can understand this better than a parent of a rare child. In this episode, host Avantika Shrivastava sp...
Why it is not easy to diagnose a rare disease
In August, a 25-day-old baby boy was diagnosed with two severe rare diseases - Pompe and Spinal Muscular Atrophy- at the specialised rare disease cent...
The impact of COVID-19 & lockdown on people with rare diseases
More than 1 million Indians have been taken ill by the COVID-19 virus, but what has been the human cost on an extremely vulnerable section of the coun...