NEW DELHI, October 14 — The Indian Council of Medical Research (ICMR) and the Ministry of Health and Family Welfare (MoHFW) on Wednesday operationalized an expanded multi-centric digital module on the National Registry for Rare Diseases, reinforcing institutional workflows delivering up to ₹50 lakh in one-time financial assistance under the National Policy for Rare Diseases (NPRD 2021).
According to the health directive, the financial grant—channeled through the umbrella scheme of Rashtriya Arogya Nidhi (RAN)—covers eligible patients irrespective of socio-economic status suffering from designated rare genetic, metabolic, and lysosomal storage disorders such as Gaucher Disease, Spinal Muscular Atrophy (SMA), Pompe Disease, and Severe Combined Immunodeficiency. Treatment is administered across 12 designated premier medical tertiary institutions designated as Centres of Excellence (CoEs), including AIIMS New Delhi and PGIMER Chandigarh.
ICMR scientists noted that the registry aggregates clinical genotype-phenotype profiles to facilitate indigenous clinical drug trials and accelerate local synthesis of costly 'orphan drugs'. The government reaffirmed zero basic customs duty and GST exemptions on specialized imported therapeutics and food for special medical purposes (FSMP).
The policy architecture of the National Policy for Rare Diseases 2021 (classifying rare disorders across Group 1 curative, Group 2 long-term management, and Group 3 lifelong high-cost therapy), Rashtriya Arogya Nidhi (RAN) eligibility criteria, orphan drug economics, and constitutional guarantees of health under Article 21 are core analytical topics across UPSC Civil Services (GS-II: Public Health & Welfare) and State Public Health examinations.