spinal muscular atrophy

spinal muscular atrophy (SMA) causes high mortality and lifelong disability. Early intervention through newborn screening (NBS) is crucial. High carrier frequency and timely treatment are vital, but financial and systemic challenges hinder developing countries like India. In contrast, developed nations like Canada, Japan, Belgium, Italy, Germany, and Australia benefit from funded health systems.

Afra, the 16-year-old spinal muscular atrophy (SMA)- affected girl whose poignant appeal to help her brother Mohammed suffering the same genetic disorder resulted in the collection of Rs 46 crore through crowdfunding, died on Monday morning. The girl from Mattool in Kannur succumbed to the disease at a private hospital in Kozhikode. She had been under treatment at the hospital for the past few days after she developed SMA-related complications.

A day after Rs 18 crore was raised for the treatment of Mohammed, the one and a half year old kid from Mattool in Kannur, who is diagnosed with the rare medical condition of spinal muscular atrophy (SMA), the authorities of Aster MIMS hospital in Kozhikode, where he will be treated, have set in motion the preliminary steps for his gene therapy treatment.

Actor Sabyasachi Mishra, who has helped many distressed people during the lockdown, has taken the responsibility of two baby girls suffering from rare diseases. He is bearing the medical expenses of the girls.

Karnataka Chief Minister Siddaramaiah has requested assistance from PM Modi for the medical treatment of a 15-month-old boy with a rare disease. The CM has asked for financial support from the Centre and for import taxes on the required medication to be waived. The baby, Maurya, is suffering from spinal muscular atrophy (SMA), and the cost of the medication is approximately Rs 17.5 crore. Siddaramaiah has urged PM Modi to intervene and provide monetary support from the PM CARES Fund to help with the procurement of the injection.

Chief minister Pinarayi Vijayan has written to Prime Minister Narendra Modi urging to waive off the customs duty and IGST on the drugs imported for spinal muscular atrophy.

India makes many of the world’s drugs, but treatments for rare diseases like spinal muscular atrophy are imported and prohibitively costly. In desperation, parents are turning to crowdfunding

In a major breakthrough which offers hope for sufferers of the fatal muscle-wasting disease, scientists have created nerve cells from skin cells.

The Indian Government has increased funding for rare diseases, especially spinal muscular atrophy (SMA), allocating Rs 82.4 crore this year. Efforts include establishing a Technical Expert Group and pushing for indigenous drug research. Calls for more awareness and budgetary support were made during SMArtCon2024 to aid the over 4,000 children born with SMA annually in India.

A Coimbatore couple who face the risk of losing their second child, too, to spinal muscular atrophy — a genetic disorder caused due to loss of nerve cells in the spinal cord and brain stem — if they fail to raise Rs 16 crore to buy drug Zolgensma, has been offered a helping hand by Vanathi Sreenivasan, national president of the Mahila Morcha of the BJP.

Central government has waived the payment of duty for the import of Zolgensma drug for the treatment of one-and-a-half year old Mohammed from Mattool in Kannur who is suffering from spinal muscular atrophy (SMA). The finance ministry, on Tuesday, issued orders exempting payment of integrated tax after considering the petition by Rafeeq, the father of the child.