Thursday, November 21

Tag: Spinal Muscular Atrophy

Empowering SMA patients and families through a multidisciplinary approach
Feature, Health News

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 8 crore-10 crore Indians suffer from one rare disease or another; over 75% are children. Spinal Muscular Atrophy (SMA) is one such rare disorder that impacts the motor neurons in the spinal cord. It is a genetic disorder and is one of the leading causes of infant mortality worldwide. The consequence of the disease is gradual muscle weakness and progressive loss of movement. SMA is a progressive condition that poses significant ...
India faces growing challenge of Spinal Muscular Atrophy (SMA) with an urgent need for policy and treatment support
Feature, Health News, National News

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 heartening to note that Delhi CM Arvind Kejriwal's recent support for a child with SMA has touched the hearts of many. The AAP government's commendable initiative to promote and support a crowdfunding drive, with a strong outpouring of support from the community, exemplifies the power of collective efforts in the fight against SMA.Last year in November, a large group of parents had also approached JK Lon Hospital ...
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