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.  Vikas Bhatia’s ordeal turned him from an ordinary parent to an advocate of securing proper diagnosis and treatment. He and his wife- Poonam Bhatia – established the Metabolic Disorders and Rare Diseases Organization of India. They describe themselves as a parental support and advocacy organisation.  What was his journey? Listen on.  This season has been made possible from a grant by the <a href="https://www.thakur-foundation.org/">Thakur Family Foundation</a>.See <a href="https://www.sunoindia.in/privacy-policy">sunoindia.in/privacy-policy</a> for privacy information.

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. Vikas Bhatia’s ordeal turned him from an ordinary parent to an advocate of securing proper diagnosis and treatment. He and his wife- Poonam Bhatia – established the Metabolic Disorders and Rare Diseases Organization of India. They describe themselves as a parental support and advocacy organisation. What was his journey? Listen on. This season has been made possible from a grant by the Thakur Family Foundation. See sunoindia.in/privacy-policy for privacy information.

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.&nbsp; Vikas Bhatia’s ordeal turned him from an ordinary parent to an advocate of securing proper diagnosis and treatment. He and his wife- Poonam Bhatia – established the Metabolic Disorders and Rare Diseases Organization of India. They describe themselves as a parental support and advocacy organisation.&nbsp; What was his journey? Listen on.&nbsp; This season has been made possible from a grant by the&nbsp;<a href="https://www.thakur-foundation.org/" rel="noopener noreferrer">Thakur Family Foundation</a>.See <a href="https://www.sunoindia.in/privacy-policy" rel="noopener noreferrer">sunoindia.in/privacy-policy</a> for privacy information.

Advocating for a rare cause

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.

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Advocating for a rare cause

Advocating for a rare cause

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