Rare Diseases in India: Treatment Gaps and Policy Challenges

In India, many people have rare diseases that are hard to treat.

These diseases are not actually rare, but they are often ignored, making them 'orphaned.'

For example, Krish, an 8-year-old boy, has a disease called MPS IV, which makes his bones grow in a way that causes him pain and makes it hard for him to walk.

His family struggles to pay for his medicine, which costs a lot of money.

The government has a policy to help, but the money provided is not enough, and many families still can't afford the treatment.

Some states like Kerala and Goa are trying to make treatments more accessible, but there are still many problems.

Advocacy groups are asking the government to do more to help these families.