A recent report in The Times of India reveals that Roche may have profited immensely from risdiplam, a drug for spinal muscular atrophy (SM...

The Supreme Court has temporarily stayed a Kerala High Court order directing the Centre to provide additional funds for a patient's expensi...

Karnataka launched free treatment for Spinal Muscular Atrophy (SMA) at the Indira Gandhi Institute of Child Health in Bengaluru. The initia...

A 24-year-old SMA patient in Kerala High Court revealed that Risdiplam, a crucial SMA drug, could be locally produced for Rs 3,000 annually...

The high cost of Zolgensma, a one-time gene therapy used to treat spinal muscular atrophy (SMA) in children under two, is to limited patien...

Kanav's father initiated an online crowdfunding campaign, which gained viral momentum and received support from the Delhi government and Bo...

The recent GST exemption on medicines for rare diseases in India is unlikely to help many patients as the drugs are still too expensive, sa...

Some people with OCD are engaged in rituals for much of their waking life and cannot even leave their homes. As the condition is difficult ...

Cure SMA Foundation of India, a parent-led organisation, had approached the court seeking exemption of GST and customs duty on treatment of...

The rare disease affects one in every 8,000 children. The bigger problem, according to parents and doctors, is the lack of awareness about ...

The lab was inaugurated virtually by Maharashtra Chief Minister Uddhav Thackeray. Another project- Spinraza therapy for spinal muscular atr...

Since its launch, over 4,000 SMA patients across over 50 countries have benefitted from the drug, Roche said in a statement.

For children affected by SPA, gene-therapy has to be ideally given before the child reaches two years of age and this therapy costs over Rs...

Justice P B Suresh Kumar said the court does not want to interdict the crowdfunding process, but it wants the funds to go to the government...

Noting that the medicine for SMA is 'prohibitively expensive' and 'unaffordable' for 18-month-old child's family, Kerala Chief Minister Pin...

While the mothers waited for guidelines, seven of the 34 children chosen for compassionate use of the new drug, Risdiplam, passed away. “It...

New York, Dec 7 (IANS) A new experimental drug may have the potential to improve the quality of life for infants suffering from a rare, let...