To ensure the effective implementation of India's National Rare Disease Policy-2021, the Delhi High Court has formed a five-member National Rare Diseases Committee to ensure that the policy benefits reach the ultimate patients.
The Court has also directed the National Consortium for research, development and therapeutics for rare diseases to give recommendations about funding clinical trials for Duchenne muscular dystrophy (DMD), reports The Pharma Letter’s India correspondent.
Approximately 96 million Indians suffer from rare diseases, and most have limited or no access to necessary treatments. Often, diagnosing these rare diseases takes seven years, leaving little time for effective intervention.
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