Rare disease treatment funds fall as centres report unspent balances
India's rare disease treatment funding fell to Rs 32.73 crore in 2025-26 from Rs 82.87 crore a year earlier, while several Centres of Excellence reported unspent balances. In Madhya Pradesh, concerns were also raised over the absence of dedicated rare disease centres in most state-run medical colleges.
Funding for rare disease treatment at Centres of Excellence has dropped sharply, with allocations falling from Rs 82.87 crore in 2024-25 to Rs 32.73 crore in 2025-26. Government data shows that many leading centres reported "carried forward unspent funds" instead of receiving fresh allocations, even as patients with rare diseases in Madhya Pradesh are still not receiving proper treatment at state-run medical colleges due to the absence of dedicated Centres of Excellence.
The funds are released under the National Policy for Rare Diseases, 2021, which supports treatment for conditions such as Duchenne muscular dystrophy, Gaucher disease, Pompe disease, cystic fibrosis and other genetic and metabolic disorders that often require long-term, high-cost therapy. The government provides up to Rs 50 lakh per patient for certain rare diseases that require expensive treatment, and selected top government hospitals are designated as Centres of Excellence for diagnosis and treatment.
Only a few institutions saw fresh releases in 2025-26. These include:
- IPGMER Kolkata (Rs 11 crore)
- AIIMS Jodhpur (Rs 11.3 crore)
- CDED-NIMS Hyderabad (Rs 8.43 crore)
Government data shows that many leading centres, including AIIMS Delhi, MAMC, PGIMER Chandigarh and SGPGI Lucknow, reported carried forward unspent funds, indicating that previously released funds are not being fully utilised within the financial year. Data accessed through RTI shows that AIIMS Delhi received nearly Rs 47 crore for rare disease treatment over the past five years, of which about Rs 34 crore has been utilised. During this period, 553 patients applied for support, but only 350 received assistance, while 170 applications remain under process.
The medical superintendent of AIIMS said funds up to Rs 50 lakh are earmarked per patient and can be spent only on that individual as per the mandate. While funds may appear unspent, they are utilised over time for that specific patient, and there is no treatment delay once a patient is approved under the scheme.
RTI data cited in the report said Rs 189 crore has been released to 13 Centres of Excellence over the past three financial years, yet several centres continue to report unspent balances. The concerns cited include delays in processing applications, under-utilisation of allocated funds, lack of clarity on support beyond the Rs 50 lakh cap, and the absence of a long-term funding mechanism for patients requiring lifelong treatment.
In Madhya Pradesh, the core issue was described as not just the lack of infrastructure, but also the absence of specialised departments and recruitment of trained medical professionals, especially for the treatment of rare diseases. At present, only AIIMS Bhopal has one such centre. Many medical colleges do not have a dedicated clinic for rare diseases like genetic disorders, and many medical colleges do not have full-fledged super-speciality branches.
The concern raised in Madhya Pradesh was that the government has focused more on opening new medical colleges rather than strengthening speciality and super-speciality departments in existing institutions. The lack of recruitment in super-speciality departments was described as one of the biggest concerns, with the argument that if the government wants to build Centres of Excellence, they need to hire new talented doctors, which is not being followed in many departments.