KOCHI: The Organisation for Rare Diseases India (ORDI) has announced the seventh edition of Racefor7, an event to raise awareness for the rare disease community in India. It will be held on February 27.
Racefor7 symbolically represents the 7000 known rare diseases, the estimated 70 million rare disease patients in India, and the average of seven years it takes to diagnose a rare disease.
In keeping with the pandemic requirements, participants can run, walk or even cycle 7 kilometers wherever they are located to lend their support for rare diseases. Racefor7 is held every year in February as part of Rare Disease Day which falls on the last day of the month.
“Delayed diagnosis, little or no available treatment, the prohibitive cost of treatment when available are some of the challenges most rare disease patients face. While we now have a National Rare Disease Policy, it does not provide viable options for funding and treatment is still not accessible for most patients,” said Prasanna Kumar Shirol, co-founder of ORDI.