Every country has its own challenge when it comes to addressing the rare disease policy, said Prasanna Kumar B Shirol, co-founder and Executive Director of Organization for Rare Diseases in...
Image Credits: Navodaya Times One year after the Centre had announced Rs 100 crore special fund for the children suffering from rare disease under National Policy on Treatment of Rare Diseases...
Inborn errors of metabolism can easily be detected at an early stage through the test and diseases can be prevented even before their symptoms appear. New Delhi: The doctors working in...
Doctors in the national capital have pitched for mandatory newborn screening (NBS) in the country stating Inborn Errors of Metabolism (IEM), often referred to as congenital metabolic diseases or inherited...
Krishna Kini with his parents Dhiraj and Surekha It has only been three months since Krishna Kini, an 11-year-old boy has started taking interest in his surroundings — he now...
New Delhi: Taking a dim view of the “somersault” by the Centre on the policy to treat rare diseases, Delhi high court has summoned the Union health secretary for an...
The Union health minister announced a ‘one-time financial assistance’ in Parliament on Friday, but did not specify any amount Days after withdrawing the national policy for treatment of rare diseases (NPTRD),...
Prasanna Shirol Updated on January 06, 2019 Centre fails patients of rare diseases Promises are futile if they fail to deliver. When the National Policy on Rare Diseases was introduced in 2017,...
Inborn errors of metabolism can easily be detected at an early stage through the test and diseases can be prevented even before their symptoms appear. New Delhi: The doctors working in...
AHMEDABAD: A city-based genetics researcher has found 12 unique variants of genes responsible for the neuronal ceroid lipofuscinoses (NCLs) — also known as Batten disease — in the Indian population....
