**Executive Summary**
This document is the answer to Unstarred Question No. 1344 in Lok Sabha, addressed to the Minister of Health and Family Welfare regarding the status of fund utilization under the National Rare Disease Policy (NPRD), 2021. The reply states that approximately Rs. 26400 Lakhs has been allocated to Centres of Excellences (CoEs) from FY 2021-22 to March, 2025 and approximately Rs. 6184 Lakhs is budgeted for FY 2025-26. Utilization Certificates from 11 CoEs are still awaited. The question is scheduled to be answered on February 6th, 2026.
**Key Points / Main Content**
* **National Rare Disease Policy (NPRD), 2021:**
* The Government has framed the National Policy for Rare Diseases (NPRD), 2021 to mitigate the challenges posed by rare diseases in India.
* Under the NPRD, 2021, financial support of up to Rs. 50 lakhs per patient is provided for the treatment of rare diseases, including Group 3 diseases.
* **Centres of Excellence (CoEs):**
* The number of CoEs under the policy has increased from 8 to 15 since its inception.
* Approximately Rs. 26400 Lakhs has been allocated to CoEs from FY 2021-22 to March, 2025.
* Approximately Rs. 6184 Lakhs is budgeted for Financial Year 2025-26.
* Patients are treated through designated CoEs based on the recommendations of the Rare Disease Committee of the concerned CoE, within existing guidelines.
* Advance funds are released to CoEs upon demand, in accordance with the General Financial Rules (GFR).
* **Fund Utilization and Monitoring:**
* Utilization Certificates of 11 CoEs are still awaited as per GFR rules.
* The Ministry periodically reviews fund utilization and other matters of rare diseases with CoEs.
**Impact Analysis**
**Centres of Excellence (CoEs)**
* **Impact:** The CoEs are receiving financial support to provide treatment for rare diseases.
* **Action Required:** The 11 CoEs that have not yet submitted their Utilization Certificates must do so according to GFR rules.
**Patients with Rare Diseases**
* **Impact:** Eligible patients can receive financial support of up to Rs. 50 lakhs for treatment under the NPRD, 2021.
* **Action Required:** Patients should seek treatment through the designated Centres of Excellence (CoEs).
Key Entities Referenced
National Policy for Rare Diseases (NPRD), 2021: A policy that provides financial support for the treatment of patients suffering from rare diseases.
Ministry of Health and Family Welfare: The primary ministry responsible for the National Policy for Rare Diseases, 2021
Centres of Excellence (CoEs): Designated centers through which rare disease patients are treated under the National Policy for Rare Diseases, 2021
Rare Disease Committee: A dedicated committee of the concerned Center of Excellence (CoE) that provides recommendations on patient treatment based on extant guidelines.
General Financial Rules (GFR): The rules in accordance with which advance funds are released to the CoEs.
GOVERNMENTOFINDIA
MINISTRYOFHEALTH AND FAMILYWELFARE
DEPARTMENTOFHEALTH AND FAMILYWELFARE
LOK SABHA
UNSTARRED QUESTION No. 1344
TO BE ANSWERED ON6thFEBRUARY2026
STATUS OFUTILIZATION OF FUNDS UNDER NATIONALRARE DISEASE
POLICY, 2021
†1344. SHRI OMPRAKASH BHUPALSINH ALIAS PAVAN RAJENIMBALKAR:
Will the Minister of HEALTH ANDFAMILYWELFARE be pleased to state:
(a) the details of the fund amount spent from the financial year 2021–22 to 2025–26,
especially up to December 2025, under the National Rare Diseases Policy, 2021, year-wise;
(b) whether the Government is aware that the pace of utilisation of funds allocated is low
despite an increase in the number of rare disease patients registered in the country and if
so, the details thereof and if not, the reasons therefor;
(c) the number of centres of excellence that have not submitted utilisation certificates for
the funds released earlier so far, which has led to a delay in release of further instalments,
institution-wise; and
(d) whether the Government has identified cases where the treatment of patients has been
delayed or postponed due to the non-availability of funds in a timely manner and if so, the
details thereof?
ANSWER
THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY
WELFARE
(SHRIPRATAPRAO JADHAV)
(a) to (d) 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 inIndia, the Government has framed the National Policy for Rare Diseases (NPRD),
2021. Under the policy, Financial support up to Rs. 50 lakhs per patient is provided under
NPRD, 2021for treatment of patientssuffering from rare diseases includingGroup 3diseases
indentified under NPRD. The number of Centre of Excellences under the policy has been
increased from 8 to 15 since its inception. The amount of approximately Rs. 26400 Lakhs
hasbeenallocatedtoCentresofExcellences(CoEs)fromfinancialyear2021-22totillMarch,
2025 and approximately Rs. 6184 Lakhs is budgeted for Financial Year 2025-26. The patient
of rare diseases are treated through the designated Centresof Excellence (CoEs) based on the
recommendations of the dedicated Rare Disease Committee of the concerned Center of
Excellence (CoE) within the extant guidelines. Advance funds are released to the CoEs as
soon as a demand for money is raised by them in accordance with the extant General
Financial Rules (GFR). Till date, Utilization Certificates of 11 CoEs are still awaited as per
GFR rules. The Ministry reviews the funds utilization and other matters of rare diseases with
CoEsperiodically.
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