Around thousand patients diagnosed with rare diseases: Centre

Around 1,000 patients diagnosed with rare diseases are registered with the Centres of Excellence, Minister of State for Health and Family Welfare Prataprao Jadhav informed Lok Sabha on Friday.
In a written reply, he said Rs 118.82 crore was allocated for treatment of rare diseases in the financial year 2024-25 and Rs 299.59 crore for 2025-26.

“Health being a state subject, the primary responsibility of providing healthcare services is that of state governments. However, to mitigate the challenges posed by rare diseases in India, the Union Ministry of Health and Family Welfare has framed National Policy for Rare Diseases (NPRD), 2021,” Jadhav said.
Under the policy, 63 disorders — including lysosomal storage disorders such as the Gaucher’s, Pompe and Fabry diseases — are categorised as rare diseases, he stated.

Financial assistance of up to Rs 50 lakh per patient is provided through 13 Centres of Excellence identified under the NPRD, Jadhav said. He clarified that the fund allocation is made under NPRD and there is no National Fund for Rare Diseases as such.

The minister said 13 premier government tertiary hospitals have been identified as Centres of Excellence for diagnosis, prevention and treatment of rare diseases. These hospitals have also been provided funds for strengthening infrastructure.

Further, medicines imported either by the Centres of Excellence for treatment of persons with rare diseases or by individuals for personal use are fully exempted from basic customs duty and the Integrated Goods and Services Tax, the minister added.