Persons with disabilities make up over 2 percent of the Indian population. While not all persons with disabilities are rare individuals, rare diseases are chronic and can lead to major disability. Both – rare individuals and persons with disabilities – have needs that are different from the larger population. 

From lifesaving medicines not reaching people due to the country-wide lockdown to lack of proper knowledge on how they can prevent the Coronavirus infection, this episode features difficult experiences. It focuses on the interview of Smitha Sadasivan, a disability rights advocate and a person with a rare illness called Multiple Sclerosis. She talks about the Indian public system proving fragile in the pandemic, and the consequent impact of this on rare individuals.

<div>Persons with disabilities make up over 2 percent of the Indian population. While not all persons with disabilities are rare individuals, rare diseases are chronic and can lead to major disability. Both – rare individuals and persons with disabilities – have needs that are different from the larger population. <br><br>
</div><div>From lifesaving medicines not reaching people due to the country-wide lockdown to lack of proper knowledge on how they can prevent the Coronavirus infection, this episode features difficult experiences. It focuses on the interview of Smitha Sadasivan, a disability rights advocate and a person with a rare illness called Multiple Sclerosis. She talks about the Indian public system proving fragile in the pandemic, and the consequent impact of this on rare individuals.</div>

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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