Overview
- India’s Health Ministry opened a two-day rare disease conference in New Delhi on Tuesday, bringing policymakers, clinicians and researchers together to map next steps.
- ICMR Director-General Dr. Rajiv Bahl urged an India-specific model that leans on prevention, population-based screening and simple digital tools to catch cases earlier.
- Under the 2021 National Policy for Rare Diseases, patients with 63 listed conditions can receive up to Rs 50 lakh at designated Centres of Excellence, helped by basic customs duty waivers on life‑saving drugs to lower prices.
- The care network is widening as Centres of Excellence expand from eight to 15, UMMID/NIDAN genetic clinics start services with stronger counselling, and roughly 1,800 patients have already received support.
- To improve access, ICMR is advancing cheaper options through indigenised therapies and six identified repurposed drugs, while collaborating with DBT and CSIR on gene therapy research that includes CAR‑T work.