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...
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,...
One of the unfortunate realities of Indian society and governance institutions at large is the fact that there is not enough conversation on the lives of persons with rare disease. With discrimination rife...
A 10-member committee, formed to draft a revised policy, has not held a single meeting yet More than 70 million people across India suffering from rare diseases do not have...
The policy was approved in May 2018 but no patients have received aid under its provisions. Now the government wants to reframe it. Seven-year-old girl with fibrodysplasia ossificans progressiva, a...
