..

My Quote ( Google Translated ) Speaking to the BBC, Prasanna Kumar Shirol, co-founder and executive director of Bengaluru-based Organization for Rare Diseases India (ORDI) said: “The recently announced policy has announced duty reduction. Which is a good thing. But overall,..

..

..

..

ORDI sees NPRD 2021 lacks focus on ailing patient affordability calls to rely on crowd funding Our Bureau, Bengaluru Wednesday, April 7, 2021, 12:30 Hrs  [IST] Organization for Rare Diseases India (ORDI) strongly believes that there are many things that are..

Rare disease policy a mockery of right to health, says Bengaluru advocacy group “The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft,”..

As per Organization for Rare Diseases India (ORDI), the National Policy for Rare Diseases, 2021 abridges the ‘right to health’ by ignoring the true needs of rare disease community in India File photo: Children suffering from rare diseases at an..

Attended the  UDNI Patient Engagement Meeting,  planning how to bring more of the patients’ perspective into UDNI.  ..

Rare Disease is any disease that affects a very less percentage of a population. Many rare diseases are serious, chronic, and progressive in nature while most rare diseases children do not get to see their 5th birthday. Although an estimated..

click below Link: http://www.pharmabiz.com/NewsDetails.aspx?aid=135938&sid=1 Nandita Vijay, Bengaluru Saturday, March 6, 2021, 08:00 Hrs  [IST] The Organisation of Rare Diseases of India (ORDI) has urged the Union government to increase the Rastriya Arogya Nidhi (RAN) grant of Rs. 15 lakh and allocate..

I was a Panalist in the  24 Hours of Rare- Virtual Event 24 Hours of Rare is the only virtual event that celebrates the global rare disease community with content programmed by the rare disease community. Brief about the programme..