The Indian Society of Clinical Research (ISCR) and the Organisation for Rare Diseases India (ORDI) are alarmed about the lack of treatment option for 70 million rare disease patients in the country and are keen to intensify clinical research. This would not just drive drug development but provide access to expensive drugs that under research […]
– By Neelam M Kachhap The rare diseases causes a range of physical, cognitive and developmental disabilities and occurs in about one in 10,000 live births Recently Rare Disease Day was observed by the Indian Society for Clinical Research (ISCR). The event held at Bengaluru aimed to raise awareness by educating people through media. Among […]
With the country’s healthcare judging its patients by statistics, the Bengaluru-based Organisation of Rare Diseases India (ORDI) is drafting a state ‘orphan drug policy’ to aid those afflicted with ‘rare illnesses’. India doesn’t have an orphan drug policy – named so, due to the research neglect into these drugs – which leaves thousands of sufferers […]
The rare diseases causes a range of physical, cognitive and developmental disabilities and occurs in about one in 10,000 live births Recently Rare Disease Day was observed by the Indian Society for Clinical Research (ISCR). The event held at Bengaluru aimed to raise awareness by educating people through media. Among those attending were Prasanna Shirol, […]
Karnataka Vision Group for Biotechnology (VGBT) and the Organization of Rare Diseases (ORDI) cordially invite you to a media briefing on Rare Diseases: Initiatives in Karnataka On the occasion of World Rare Diseases Day (28th February), the two organizations will announce initiatives undertaken for rare disease patients in Karnataka Agenda Time Session Speaker 11:30-11:35am Opening […]
World Rare Diseases Day: VGBT and ORDI partner in Karnataka Bangalore: Around seventy million patients in India (three to four million in Karnataka) are affected with one of more than seven thousand rare diseases. The number of patients with known and novel rare diseases is increasing every year. Due to the inadequate infrastructure or the […]
– Nandita Vijay, Bengaluru The Karnataka Vision Group on Biotechnology has now put in place the draft of the Rare Diseases and Orphan Drugs Development Act. Efforts are on to enforce the Act by the year end. “There is need for a dedicated Act considering the burden of the rare diseases impacting Indian population. There […]
Kochi, Kerala, India.