BENGALURU: Prasanna Shirol is a man on a mission. Come Feb. 28 and the city-based resident will gear up for a 7km-long run. Called the Race for 7, the event is being organised by the Organisation of Rare Diseases in India (ORDI). The idea, says founder-director Shirol, is to spread awareness about rare diseases, where the number ‘7’ plays a crucial role. “It represents the worldwide number of such diseases, which is 7,000. Other than this, seven months is also the average number of years taken to diagnose such a disease,” explains Shirol, whose child also has a rare disease: Pompe.
The race is the organisation’s sixth such event and will be held on Feb. 28, which also marks Rare Disease Day. Shirol explains that while 7,000 such diseases are known worldwide, treatment is only available for over 500. The others require supportive care. The father’s own experience with learning about such diseases in 2008/2009 is what prompted him to take up advocacy for the cause. Eventually, ORDI was set up in 2013.
“These diseases need to be properly diagnosed in order to be treated. But even after diagnosis, there is lack of awareness about access to medicine and long term care. The situation may be worse in villages because government hospitals are even lesser equipped with identifying these diseases,” he explains.
Problems can rise internally as well. Since many of these diseases are genetic in nature, people often stay mum. Breaking this stigma is what Shirol hopes to do with the race.
While typical marathon bibs carry a registration number, these will also include the disease a person is running for. “People will get prompted to at least look up the name and learn more about the condition,” he says of the virtual race, which will be tracked through an app. “The benefit of doing it virtually is that we are seeing participation from different nooks and corners like villages in Kerala or Rajasthan and Siliguri.”
The race will take place on Feb. 28. For details, check ORDI’s website.