A group of parents, a Mumbai doctor and some NGOs lobbied long and hard to get a local pharma company to manufacture Trientine, a drug that can treat a genetic condition called Wilson’s Disease. It proved to be a rare bit of good news for patients living with the rare disease but there are many thousands more who have been waiting years without hope or medical breakthrough. Sharad Kohli and Sakshi Virmani reached out to these patients and found their faith in the system severely tested. Those in the know – doctors, advocates and pharma insiders – believe the national rare diseases policy needs an urgent rethink
Read more at : https://timesofindia.indiatimes.com/city/gurgaon/the-make-in-india-story-that-india-really-needs/articleshow/68542482.cms
