Empowering SMA patients and families through a multidisciplinary approach

Jaipur, May, 2024. Rare diseases in India have gained increased attention in recent years, shedding light on the challenges faced by patients and caregivers. India accounts for one-third of the global rare disease incidence, with over 450 identified diseases. Though our country lacks a standard definition for rare diseases, a rough estimate suggests that about…

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India faces growing challenge of Spinal Muscular Atrophy (SMA) with an urgent need for policy and treatment support

Jaipur, October, 2023. Spinal Muscular Atrophy (SMA), a rare genetic disorder that affects the motor neurons in the spinal cord, has emerged as a pressing concern in India, demanding immediate attention from healthcare authorities and policymakers. SMAposes severe challenges to patients, caregivers, and the healthcare system, and its economic burden cannot be ignored. It is…

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