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Comprehensive National Policy for Rare Diseases (NPRD) 2021: Categorized Treatment, Financial Aid, and Specialized Care Across India

NextEdge Admin

10 Aug 2024

3 min 22 sec

The National Policy for Rare Diseases (NPRD) 2021 launched by the Ministry of Health & Family Welfare, India, aims to address the needs of patients with rare diseases by categorizing these conditions into three groups based on the nature of their treatment requirements.

Key Features of NPRD 2021:

1. Categorization of Rare Diseases:
- Group 1: Disorders amenable to one-time curative treatment (e.g., certain Lysosomal Storage Disorders, immune deficiency disorders, and conditions treatable with hematopoietic stem cell or organ transplantation).
- Group 2: Diseases requiring long-term or lifelong treatment with relatively lower costs (e.g., Phenylketonuria, Tyrosinemia, Cystic Fibrosis).
- Group 3: Diseases with definitive treatment available but requiring optimal patient selection, involving high costs and lifelong therapy (e.g., Gaucher Disease, Pompe Disease, Spinal Muscular Atrophy).

2. Centres of Excellence (CoEs):
- Twelve premier government tertiary hospitals have been designated as CoEs for the diagnosis, prevention, and treatment of rare diseases. These centers provide patients with access to specialized care and financial assistance.

3. Financial Assistance:
- Patients can receive up to ₹50 lakhs for treatment at the CoEs.
- The Ministry has obtained exemptions from GST and Basic Customs Duty on drugs imported for rare diseases.

4. National Consortium for Research:
- The Department of Health Research has established the National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) to streamline research activities related to rare diseases.

5. Current Reach:
- As of now, 1,118 patients have benefited from the policy.

Centers of Excellence (CoEs) Include:
- AIIMS, New Delhi
- Maulana Azad Medical College, New Delhi
- Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow
- PGIMER, Chandigarh
- Nizam’s Institute of Medical Sciences, Hyderabad
- King Edward Medical Hospital, Mumbai
- Institute of Post-Graduate Medical Education and Research, Kolkata
- Indira Gandhi Hospital, Bengaluru
- ICH & HC, Chennai
- AIIMS, Jodhpur
- Government Medical College, Thiruvananthapuram
- AIIMS, Bhopal

The policy aims to reduce the burden on patients with rare diseases by providing both financial support and access to specialized care.