The Organization for Rare Diseases India (ORDI) hosted the seventh edition of Racefor7 on Sunday to raise awareness for the rare disease community in India. The virtual race was flaged off by Dr. L. Swasticharan, Addl DDG & Director (Emergency Medical Relief). This year, 4000 people from across 200 venues participated in the race.
Racefor7 symbolically represents the 7000 known rare diseases, the estimated 70 million rare disease patients in India and the average of 7 years it takes to diagnose a rare disease. Keeping with the pandemic requirements, participants could run, walk or even cycle 7 kilometers from where they were located to lend their support for rare diseases. Every year in February, Racefor7 is held to honor Rare Disease Day, which occurs on the last day of the month.
Speaking at the inauguration, Dr. L. Swasticharan, Addl. DDG & Director Emergency Medical Relief; said. “I am happy that Organisation of Rare Diseases is hosting a mega event in India to raise awareness for rare diseases. There are many rare diseases in India but we are able to find solutions to only a few of them so far. So, we have to pledge that we help spread awareness for the rare diseases. I wish all our participants good luck for the race.”
Speaking about the event, Prasanna Kumar Shirol, Co-founder and Executive Director of ORDI, said, “It is really heartening to see so many people come out to support the cause of patients with rare diseases by participating in Racefor7. Every step taken is a major step forward in building advocacy and letting the voices of rare disease patients be heard stronger and wider which we know will lead to a better understanding of rare diseases and a brighter future for patients and their caregivers. Our sincere gratitude from the rare disease community to all participants..”
All participants received a t-shirt bearing the name of one rare disease to help spread awareness, finisher medals and e-certificates.
Amit Mookim, Managing Director of IQVIA South Asia, main sponsors of Racefor7 said, “We are pleased to partner with ORDI to raise rare disease awareness in India. The wonderful turnout for Racefor7 even during the pandemic is indicative of the altruistic spirit of members of the public and we hope the support to the rare diseases community continues through the year. As an organisation, IQVIA remains committed to working with customers and other stakeholders to support rare diseases and ensure better outcomes for patients. “
Rare Disease Day, observed on the final day of February each year, is a worldwide movement aimed at achieving equity in social opportunity, healthcare, and access to diagnosis and therapies for those living with rare diseases. ORDI’s mission is to be a strong united voice for all rare diseases in India, to reduce inequalities and ensure that people living with rare diseases have access to the same resources as the rest of the population.