Parliament Question: National Fund for Rare Diseases

GOVERNMENTOFINDIA MINISTRYOFHEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH AND FAMILYWELFARE LOK SABHA UNSTARRED QUESTION No. 1016 TOBE ANSWERED ON5th DECEMBER 2025 NATIONALFUND FOR RARE DISEASES

1016. SHRI ARVIND GANPAT SAWANT:

SHRI SANJAY HARIBHAU JADHAV:

Will the Ministerof HEALTH AND FAMILYWELFAREbe pleasedtostate:

(a) the budget allocation for the National Fund for Rare Diseases (NFRD) during the last two financial years 2024–25 and 2025–26, State-wise;

(b) whether the Government has any other dedicated funds or financial mechanisms to support the treatment of rare diseases in the country and if so, the details thereof;

(c) the total number of disorders currently classified as rare diseases in the country;

(d) whether the Government provides financial assistance to patients suffering from rare diseases under any specific schemes, if so, the details thereof and if not, the reasons therefor; and

(e) the current status of the Centres of Excellence (CoEs) established for the diagnosis and treatment of rare diseases along with the number of patients who have received treatment at these Centres? ANSWER THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY WELFARE (SHRIPRATAPRAO JADHAV)

(a) to (e) Health being a State subject, the primary responsibility of providing healthcare services is that of the State Governments. However, to mitigate the challenges posed by rare diseases in India,the Government launched the National Policyfor Rare Diseases (NPRD) in

2021. Under NPRD, funds are provided to the 15 designated Centers of Excellence (CoEs) for treatment of 63 identified Rare Diseases. Based on the recommendation of the dedicated Rare Disease Committees of the CoEs, more than 1400 patients have received treatment under NPRD as on date. Rs. 118.82 cr. and Rs. 299.59 cr. have been allocated to NPRD for FY2024-25 and2025-2026 respectively.

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