The heavier burden is Huntington’s Disease (HD), a rare medical condition that has afflicted her family. Although globally classified as a rare disease, Huntington’s Disease is increasingly recognised as underdiagnosed in India due to limited awareness, according to Dr. Nikhil Ratna, a doctor and founder member of the Huntington’s Disease Society of India (HDSI), formed in 2019. According to available data, there is currently no database on Huntington’s Disease at either the national or State level. In 2021, the Union government formulated the National Policy for Rare Diseases (NPRD)-2021 for identification, prevention and providing support to families with rare diseases. According to the National Policy for Rare Diseases (NPRD), there are more than 7,000 rare diseases worldwide, but fewer than five per cent of them have treatment options.

Source: The Hindu January 03, 2026 17:22 UTC