Lok Sabha Question No. 5592 (UNSTARRED), answered on 2026-03-27
Subject: Duchenne Muscular Dystrophy (DMD) in Children
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Shri Deepender Singh Hooda

## GOVERNMENTOFINDIA MINISTRYOF HEALTH AND FAMILY WELFARE DEPARTMENTOFHEALTH AND FAMILY WELFARE

## LOK SABHA UNSTARRED QUESTION No. 5592 TO BE ANSWERED ON 27 th MARCH 2026

## DUCHENNE MUSCULAR DYSTROPHY(DMD) IN CHILDREN

## 5592. SHRI DEEPENDER SINGH HOODA:

Will the Minister of HEALTHANDFAMILYWELFARE be pleased to state:

(a) whether the Government has data on the number of children who have died due to Duchenne Muscular Dystrophy (DMD) during the last five years, if so, the details thereof, year-wise and State/UT-wise and if not, the reasons therefor;

(b) the estimated number of children suffering from DMD in the country, State/UT-wise; and

(c) whether the Government has prepared any time-bound roadmap to address DMD in the country, including milestones such as the availability of affordable treatment and the establishment of treatment centres and if so, the details thereof?

## ANSWER

## THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (SHRI PRATAPRAO JADHAV)

(a) and (b) As per the data obtained from the National Registry for Rare and Other Inherited Disorders (NRROID) maintained by the Indian Council of Medical Research (ICMR), since 2019, around 4749 Duchenne Muscular Dystrophy (DMD) patients have been enrolled in 23 centers across the country. A total of 184 DMD patients are reported as deceased in the Registry. State/UT-wise distribution of this data is placed at annexure.

(c) DMD is categorized as a rare disease under the National Policy for Rare Diseases (NPRD), 2021 framed by the Ministry of Health and Family Welfare. 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 policy provides financial and medical assistance for treatment of patients suffering from identified rare diseases in the designated Centers of Excellence (CoEs). Following measures have already been taken to address the DMD issue:

-  The limit of financial assistance provided by NPRD for treatment of rare disease has increased from ₹20 lakhs to ₹50 lakhs per patient. Rare Disease Committee of the CoEs decides treatment and fund allocation after clinical examination on case-to-case basis.
-  Since the inception of the NPRD, the number of CoEs has increased from 8 to 15 and the number of rare diseases covered under the policy has increased from 51 to 63.
-  The Ministry of Finance provides exemption from Basic Customs Duty (BCD) and Integrated Goods and Services Tax (IGST) on most of the drugs, medicines and Food for Special Medical Purposes (FSMP), subject to extant rules.
-  Some Made-in-India drugs have become available at 1/10 th of the price of the imported Reference Listed Drug (RLD) as NITI Aayog constituted a Committee for ' Drugs and Dosage Forms for Rare Diseases: Engagement with Manufacturers ' to fast track indigenous development and marketing of identified orphan drugs by engaging with domestic manufacturers.
-  The Department of Pharmaceuticals has initiated implementation of ' Production Linked Incentive ' scheme for pharmaceuticals which provides financial incentives to the manufacturers selected for domestic manufacturing of various product categories, including rare disease medicines.

## Annexure

## State/UT-wise number of DMD Patients enrolled in the NRROID since 2019

| State/UTs        |   No. of patients |
|------------------|-------------------|
| Uttar Pradesh    |               911 |
| Karnataka        |               547 |
| West Bengal      |               428 |
| Tamil Nadu       |               342 |
| Bihar            |               300 |
| Delhi            |               286 |
| Andhra Pradesh   |               255 |
| Rajasthan        |               219 |
| Madhya Pradesh   |               209 |
| Telangana        |               201 |
| Haryana          |               197 |
| Kerala           |               153 |
| Maharashtra      |               149 |
| Punjab           |               147 |
| Gujarat          |                77 |
| Odisha           |                58 |
| Jharkhand        |                51 |
| Himachal Pradesh |                44 |
| Assam            |                42 |
| Jammu Kashmir    |                33 |
| Uttarakhand      |                31 |
| Chhattisgarh     |                25 |
| Tripura          |                15 |
| Chandigarh       |                13 |
| Puducherry       |                 7 |
| Ladakh           |                 3 |
| Manipur          |                 3 |
| Nagaland         |                 2 |
| Mizoram          |                 1 |
| Grand Total      |              4749 |

Source: National Registry for Rare and Other Inherited Disorders (NRROID) maintained by Indian Council of Medical Research.

| State/UTs      |   No. of patients |
|----------------|-------------------|
| Karnataka      |                77 |
| West Bengal    |                25 |
| Andhra Pradesh |                24 |
| Uttar Pradesh  |                11 |
| Assam          |                 7 |
| Bihar          |                 7 |
| Tamil Nadu     |                 5 |
| Telangana      |                 5 |
| Haryana        |                 4 |
| Kerala         |                 4 |
| Maharashtra    |                 4 |
| Rajasthan      |                 3 |
| Punjab         |                 2 |
| Chhattisgarh   |                 1 |
| Delhi          |                 1 |
| Jharkhand      |                 1 |
| Madhya Pradesh |                 1 |
| Odisha         |                 1 |
| Tripura        |                 1 |
| Total          |               184 |

Source: National Registry for Rare and Other Inherited Disorders (NRROID) maintained by Indian Council of Medical Research.