By Jung Hae-myoung Starting next year, more patients battling rare diseases will pay less for their medical expenses, as 100 disorders have been newly added to the government’s subsidy list,...
Farber disease is a rare, autosomal-recessive disorder caused by a mutation in the acid ceramidase gene, which leads to accumulation of sphingolipids in various tissues.1 It typically presents with a combination...
Washington DC: Call it the “Art of Giving to the motherland, the techies’ way”. After building America with their brains and grit, the Indian techies are going all out to...
Chinese scientist He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong on November 28, 2018. The announcement of the birth of babies with edited...
The ministry of health and family welfare that is getting continuous requests from patient organizations for funds has reached out to the finance ministry seeking financial help. New Delhi: Several...
In 2012, Ethan Perlstein challenged the academic status quo. Now as CEO of the start-up Perlara, can he do the same for the biotech industry? In 2012, molecular biologist Ethan...
Today, more than 5,000 diseases are catalogued as “rare” by the scientific community, so long as they affect small sections of population. The drugs used for the treatment of rare...
Health experts Wednesday highlighted the need for an immediate call-to-action for the implementation of the National Policy for Treatment of Rare Diseases, stating that the patients were suffering and losing...
Medical experts say India also needs an orphan drug policy to provide incentives to pharmaceutical companies to innovate and manufacture drugs for rare diseases...
For Maqsood Alam, saving his 20-month-old son, Ahsan, has become a personal challenge after he lost three of his children to Gaucher disease in the past. Ahsan, born in February...
