Government expands centres of excellence for rare diseases to 15

The Union government has increased the number of Centres of Excellence (CoEs) under the National Policy for Rare Diseases (NPRD) from eight to 15 since the policy’s inception, Minister of State for Health Prataprao Jadhav informed the Lok Sabha on Friday.

Jadhav stated that approximately Rs 26,400 lakh has been allocated to the CoEs from the financial year 2021-22 to March 2025, while around Rs 6,184 lakh is budgeted for FY 2025-26.

Highlighting that healthcare is primarily a state subject, the minister said the Centre provides financial support and policy frameworks to assist in tackling rare diseases. Under the NPRD, patients suffering from rare diseases, including Group 3 disorders, are eligible for financial assistance of up to Rs 50 lakh per patient for treatment.

The NPRD has designated 15 premier government medical institutions as CoEs for rare diseases across India, including AIIMS (Delhi, Jodhpur, Bhopal, Patna), Maulana Azad Medical College (Delhi), SGPGIMS (Lucknow), PGIMER (Chandigarh), KEM Hospital (Mumbai), IPGMER (Kolkata), CDFD-NIMS (Hyderabad), CHG-Indira Gandhi Hospital (Bengaluru), Institute of Child Health (Chennai), SAT Hospital (Thiruvananthapuram), Assam Medical College (Dibrugarh) and RIMS (Imphal). These centres provide specialised diagnosis, treatment, screening and research support for patients with rare diseases.

These Centres of Excellence provide diagnosis, treatment, care, and research for a wide range of rare diseases under the NPRD, including l ysosomal storage disorders (Gaucher’s, Pompe, Fabry, MPS), metabolic and genetic conditions (Maple Syrup Urine Disease, PKU, organic acidemias, urea cycle defects), immune and blood disorders (SCID, Chronic Granulomatous Disease, Wiskott‑Aldrich Syndrome), as well as other rare conditions like cystic fibrosis, spinal muscular atrophy, Duchenne muscular dystrophy, and other inherited or congenital disorders.

Patients are treated at designated CoEs based on recommendations from the Rare Disease Committee of the concerned centre, following existing guidelines. Funds are released to CoEs promptly upon request, in accordance with the General Financial Rules (GFR) .

However, Jadhav noted that utilisation certificates from 11 CoEs are still pending , as per GFR regulations. The ministry conducts periodic reviews of fund utilisation and other matters concerning rare diseases with the CoEs.

This expansion reflects the government’s ongoing commitment to strengthen infrastructure and improve access to treatment for patients with rare diseases across India.