Initiative

Initiative for Rare Diseases 

https://www.pib.gov.in/PressReleaseIframePage.aspx?PRID=2043516
https://rarediseases.mohfw.gov.in/uploads/Content/1624967837_Final-NPRD-2021.pdf

Centre of Excellence Treating Rare Disease

The Centre of Excellence (CoE) treating rare diseases in India is a key component of the National Policy for Rare Diseases (NPRD), 2021. These centers are designated government tertiary hospitals with facilities for the diagnosis, prevention, and treatment of rare diseases.

Process for a Patient to Avail Treatment at a CoE
The process for a patient to get treatment at a Centre of Excellence generally involves the following steps:

Approach a CoE: A patient with a diagnosed or suspected rare disease needs to approach the nearest or any of the designated CoEs.

Registration: The patient registers at the CoE. This is a crucial step to get on the official list and to be considered for financial assistance.

Evaluation and Recommendation: The CoE's medical team evaluates the patient's condition and makes a recommendation for treatment.

Application for Financial Assistance: Under the NPRD, 2021, the government provides financial support of up to ₹50 lakh per patient for treatment at a CoE. This assistance is not limited to BPL (Below Poverty Line) families but is extended to about 40% of the population eligible under the Pradhan Mantri Jan Arogya Yojana.

Fund Disbursement: The funds are released directly to the CoE by the government based on the recommendations of the Rare Disease Committee at the CoE.

Crowdfunding: For diseases that require a high-cost, long-term or lifelong treatment (Group 3 diseases), the government has set up a digital portal for crowdfunding and voluntary donations. The CoEs list the patients in urgent need of crowdfunding on this portal.

List of Centres of Excellence (CoEs)
As of  sep 2025, there are a number of designated CoEs across India, including:

All India Institute of Medical Sciences (AIIMS), New Delhi

Maulana Azad Medical College (MAMC), New Delhi

Sanjay Gandhi Post Graduate Institute of Medical Sciences (SGPGI), Lucknow

Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh

Centre for DNA Fingerprinting & Diagnostics (CDFD) with Nizam's Institute of Medical Sciences, Hyderabad

King Edward Memorial (KEM) Hospital, Mumbai

Institute of Post-Graduate Medical Education and Research (IPGMER), Kolkata

Centre for Human Genetics (CHG) with Indira Gandhi Hospital, Bengaluru

Institute of Child Health and Hospital for Children (ICH & HC), Chennai

All India Institute of Medical Sciences (AIIMS), Jodhpur

Sree Avittam Thirunal (SAT) Hospital, Government Medical College, Thiruvananthapuram

All India Institute of Medical Sciences (AIIMS), Bhopal

All India Institute of Medical Sciences (AIIMS), Patna

Assam Medical College & Hospital, Dibrugarh

Key Features of the National Policy for Rare Diseases (NPRD), 2021
The NPRD, 2021 provides the framework for rare disease management in India. Its key features include:

Financial Assistance: A financial support of up to ₹50 lakh is available per patient for treatment at the designated CoEs.

Categorization of Diseases: Rare diseases are categorized into three groups:

Group 1: Disorders amenable to one-time curative treatment.

Group 2: Diseases requiring long-term/lifelong treatment with a relatively lower cost.

Group 3: Diseases for which definitive treatment is available, but are very high-cost and require lifelong therapy.

National Registry: The policy aims to create a national hospital-based registry of rare diseases to gather data for research and development.

Research & Development: It encourages indigenous research and development of drugs for rare diseases. A National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) has been established for this purpose.

Import Exemptions: The government provides exemptions from Basic Customs Duty (BCD) and Integrated Goods and Services Tax (IGST) on drugs imported for the treatment of identified rare diseases.

Crowdfunding Platform: A digital platform has been created to facilitate voluntary donations from individuals and corporations to help cover the treatment costs for patients, especially those with Group 3 diseases.

 
https://pib.gov.in/PressReleseDetailm.aspx?PRID=2043516

https://rarediseases.mohfw.gov.in/Hospital_Treating_Rare_Diseases

FOR RARE Disease Family 

Help in center of Excellence Assessment/ Treatment   
Helpline: +91-8892555000
Email: contactus@ordindia.in
 
Diet for Life 
https://eatrightindia.gov.in/diet4life/

https://fssai.gov.in/cms/diet4life.php

https://fssai.gov.in/upload/knowledge_hub/1385075b34be3d5828aDiet4Life.pdf

https://fssai.gov.in/upload/advisories/2021/06/60dc63950f19cDirection_IEM_30_06_2021.pdf

https://www.fssai.gov.in/upload/advisories/2022/02/6204fbf56a3aeOrder_IEM_10_02_2022.pdf

2=Government of Rajasthan Portal for rare Disease  
A-https://rajsambal.rajasthan.gov.in/Index.aspx

B- मुख्यमंत्री आयुष्मान बाल सम्बल योजना

https://sje.rajasthan.gov.in/siteadmin/Uploads/202412171017148768.pdf

The information provided in this Above  has been sourced from various websites and articles. By no means we claim to be exhaustive or up-to-date.