Ahead of Rare Diseases Day, experts urge action on comprehensive policy and enhanced patient care
Jaipur, February 2024.
As Rare Diseases Day approaches in February, healthcare experts are calling for a comprehensive Rare Disease Policy as the need of the hour. According to the World Health Organization (WHO), rare diseases typically affect fewer than 1 in 1,000 individuals, and in India, around 70 million people grapple with 450 rare diseases, including the particularly debilitating Spinal Muscular Atrophy (SMA).
Spinal Muscular Atrophy is a rare genetic condition characterized by the progressive loss of motor neurons, resulting in severe muscle weakness and potential life-threatening complications.Patients with SMA have either no access to treatment or are left with very limited options for cure. With thousands affected in India, raising awareness, providing support, and implem...
