BENGALURU: About 150 children suffering from rare diseases took part in Racefor7, a multi-city run, to raise awareness on rare diseases. About 4,500-odd people took part in the run, which was flagged off by MP Tejasvi Surya, medical education minister Sudhakar and actor Shwetha Prasad.
Conducted by the Organization for Rare Diseases India (ORDI) and sponsored by IQVIA, the run began from St Joseph’s Indian High School, near UB City. Racefor7 represents the 7,000-odd rare disease people suffer from, with people running for 7 km to symbolise that it takes seven years on an average to diagnose a rare disease.
“They may be called rare but we cannot afford to ignore the 70 million rare disease patients in India. We all need to unite to create a more inclusive society for the rare disease community. Racefor7 has my complete support as do all the patients and their families,” said MP Surya.
The lack of awareness among people and the lack of affordable treatment are hurdles. Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient, said, “About 50% of all rare disease patients are children. This is a fact not many are aware of.” Dr Meenakshi Bhat, consultant, clinical genetics, Centre for Human Genetics, said, “In India, awareness about rare diseases is low among general public and doctors.”
Reframe rare
Racefor7 is held in February to commemorate World Rare Disease Day. The theme for Rare Disease Day 2020 is ‘Reframe Rare for Rare Disease Day’ with the message that ‘Rare is many, rare is strong and rare is proud’. In Karnataka, the run will take place in Mysuru on March 8 and Davanagere on February 29.