spinal muscular atrophy

Public health activists estimate Roche earned significantly more from risdiplam, a spinal muscular atrophy drug, than its development costs. Roche disputes this, citing expenses from unsuccessful projects and ongoing research. While the drug remains unaffordable for many in India, Roche offers access programs and free treatment to some patients.

Comedian Samay Raina faces legal trouble again. The Supreme Court is upset about his alleged insensitive comments. These comments were about a baby with spinal muscular atrophy. Raina previously faced criticism for a joke on his show. The Cure SMA Foundation of India filed an application. They highlighted the high cost of SMA drugs.

Samay Raina faces legal trouble after allegedly making insensitive comments about disabled individuals on his YouTube show, India's Got Latent. The Supreme Court expressed deep concern over his remarks, particularly those mocking the high cost of SMA treatment and making derogatory jokes about a visually impaired contestant.

The Supreme Court of India seeks responses from the Centre and Roche on making the spinal muscular atrophy treatment drug Risdiplam affordable in India. The move comes after it was reported that the drug is much cheaper in Pakistan and China due to government interventions.

Dr Siddarth Reddy, a leading paediatric neurologist at Siddarth Hospitals, pioneers advancements in treating neurological disorders like Autism Spectrum Disorder (ASD). His integrative approach combines innovative therapies with compassionate care, significantly improving the lives of children and providing support to their families.

On World Rare Diseases Day, India's focus is on the high cost of treatments for rare diseases due to monopoly drug pricing. The National Policy for Rare Diseases aims to lower costs and promote local drug manufacturing. A patient's court battle for affordable SMA treatment highlights the need for policy implementation and transparent drug pricing.

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.

From twins who share a placenta to genetic and heart disorders, fetal surgery sees dramatic advances

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.