India's Major Push Against Rare Diseases

India's Health Ministry has registered 1,000 patients with rare diseases at Centres of Excellence. Funds allocated for rare diseases treatment are Rs 118.82 crore for 2024-25 and Rs 299.59 crore for 2025-26. The National Policy for Rare Diseases, 2021 categorizes 63 disorders as rare, providing financial assistance up to Rs 50 lakh per patient.

The Minister of State for Health and Family Welfare, Prataprao Jadhav, informed the Rajya Sabha that approximately 1,000 patients diagnosed with rare diseases are currently registered at the designated Centres of Excellence. He disclosed that substantial financial allocations have been made for the treatment of these diseases, with Rs 118.82 crore earmarked for the financial year 2024-25 and Rs 299.59 crore for 2025-26.

Explaining the government's strategy, Jadhav stated, "Health is primarily a state subject, yet given the challenges posed by rare diseases in India, the Union Ministry of Health and Family Welfare has conceptualized the National Policy for Rare Diseases (NPRD) in 2021." Under the NPRD, 63 disorders, including lysosomal storage disorders such as Gaucher's, Pompe, and Fabry diseases, are classified as rare diseases.

Jadhav further noted that financial assistance of up to Rs 50 lakh per patient is available through 13 designated Centres of Excellence. He clarified the fund's origin, noting that it draws from NPRD allocations and highlighted the absence of a distinct National Fund for Rare Diseases. Additionally, he remarked that 13 prominent government hospitals serve as Centres of Excellence for the diagnosis, prevention, and treatment of rare diseases, with necessary infrastructure development funded by the government. Patient medication imports for rare diseases are exempt from basic customs duty and IGST, providing further relief to affected individuals.

(With inputs from agencies.)