Race for 7 was first held in India in 2016 on the last Sunday of February to commemorate World Rare Disease Day which falls on February 29th. This year, Race for 7 was held simultaneously in two countries and three cities, namely Bengaluru, Mumbai and Washington DC with a smaller event in Jaipur and South Carolina.
Speaking on the occasion, Dr. Jagdish Mittur, Lead - Biotechnology Facilitation Cell at KBITS, Government of Karnataka said, “Given the high prevalence of rare diseases, the term ‘rare’ is misleading and we should perhaps find another name for it. I am heartened that organizations like ORDI have taken up the task of amplifying the voice of the rare disease community and working towards a better tomorrow for them. I encourage industry and high net worth individuals to also come forward to invest in the cause of rare diseases.”
Prasanna Kumar B Shirol, Founder Director, ORDI and the father of Nidhi Shirol, a rare disease patient, said, “An event like Race for 7 is a reminder that we are not alone in championing the cause of the rare disease community. It was heartening to see so many Bengalureans of all ages support us today. The success of Race for 7 in previous years has gone a long way in creating better awareness and enabling us to extend our support to more rare disease patients be it in the area of early diagnosis, treatment and care and even in the advancement of policies for rare disease patients. This year’s Race for 7 focus is on ‘Rare Disease Policies’ and we hope that Central and State Governments will expedite policies for rare disease patients.”