India's rare disease policy does not give hope to patients: Experts

India is home to nearly 70 million rare disease patients, but the country lacks significantly in terms of research, treatment as well as government policies, experts said here on Monday.

February 28 is globally observed as Rare Disease Day. It was set up by the European Organisation for rare diseases and was first observed in 2008.

Rare diseases include genetic diseases, rare cancers, infectious tropical diseases, and degenerative diseases. About 80 per cent of rare diseases are genetic in origin and hence, disproportionately impact children.

"As per data that is available in India, there are around 70 million rare disease patients. However, the number could be much higher than that and that is difficult to gauge," Prof Alok Bhattacharya, Professor of Biology and Head of Department at Ashoka University, told IANS.

"It is because unfortunately neither the epidemiological studies have been done in India nor we have any idea about how many patients are there partly because there are only few centres where real diagnosis and management of these diseases happen," he lamented.

Further, Bhattacharya said that research on rare diseases has been "very rare" in India.

But there has been some improvement in the diagnosis of the disease due to private DNA sequencing sectors that are necessary for confirmative diagnosis of many of the diseases, he noted.