Centres of Excellence for Rare Disease

Why in news?

The Union Ministry of Health and Family Welfare is discussing adding more Centres of Excellence (CoEs) to its network of centres to improve access to diagnosis and treatment for patients suffering from rare diseases.

• Centres of Excellence – They are institutions identified by the central government under the National Policy for Rare Diseases (NPRD), 2021.
• Aim – To treat patients suffering from rare diseases actively.

• Numbers – There are 12 such centres.
• Coverage – These centres cover with a quota of 2,420 rare disease patients from 6 categories across 3 groups.

Currently, 63 rare diseases are included under NPRD on recommendation of Central Technical Committee for Rare Diseases (CTCRD).

• Tax exemption – GST and Basic Customs Duty on drugs imported for Rare Diseases for individual use and through CoE.
• Challenges – It has lack of institutional care at CoEs to the exhaustion of the one-time fund of Rs 50 lakh given to patients.
• It fails to support sustained treatment for chronic conditions like Lysosomal storage disorders (LSDs).

Rare Disease Day was observed on the last day of February i.e., 28^th February (or 29 in leap years).

Reference

PIB | National Policy for Rare Diseases