Number of centres of excellence for rare diseases increased from 8 to 15: Govt

New Delhi: The number of Centres of Excellence under the National Policy for Rare Diseases (NPRD) has been increased from eight to 15 since its inception, Minister of State for Health Prataprao Jadhav told the Lok Sabha on Friday.

The amount of approximately Rs 26,400 lakh has been allocated to Centres of Excellence (CoEs) from the financial year 2021-22 to March 2025, and approximately Rs 6,184 lakh is budgeted for FY 2025-26, Jadhav said in a written reply.

Health being a state subject, the primary responsibility of providing healthcare services is that of the state governments, Jadhav underlined.

However, to mitigate the challenges posed by rare diseases in India, the government has framed the National Policy for Rare Diseases, 2021.

Under the policy, financial support up to Rs 50 lakh per patient is provided for the treatment of patients

suffering from rare diseases, including Group 3 diseases, Jadhav stated.

“The number of Centres of Excellence under the policy has been increased from eight to 15 since its inception,” he said.

Patients with rare diseases are treated through the designated CoEs based on the recommendations of the dedicated Rare Disease Committee of the concerned CoE within the extant guidelines.

Advance funds are released to the CoEs as soon as a demand for money is raised by them in accordance with the extant General Financial Rules (GFR).

To date, Utilisation Certificates of 11 CoEs are still awaited as per GFR rules, Jadhav said.

The ministry reviews the funds utilisation and other matters of rare diseases with CoEs periodically, he stated.