Aimed at raising money for treatment of rare diseases that need expensive and life-long treatment and affect a small percentage of the population News:- 1)Platform launched on August 10; 31 campaigns listed so far that need to raise more than..

The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year. BENGALURU: In an ongoing case in the Karnataka High Court over the treatment of patients with Lysosomal Storage Diseases (LSDs), it..

Attended RDI Members Meeting on the Global State of the Art Resource for Rare Diseases (SoA)...

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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,..

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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..