Chennai, Feb 28 : 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 and Director (Emergency Medical Relief). This year 4,000 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 km 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. Dr. Swasticharan 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.” 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, he said. All participants received a t-shirt bearing the name of one rare disease to help spread awareness, finisher medals and e-certificates.
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.
