Bengalureans join race against rare diseases

Scores of people from across the City joined hands with those suffering from rare diseases on Saturday. The event, Race for 7, was organised by the Organisation for Rare Diseases India (ORDI), ahead of the World Rare Disease Day.

A 7-km race was flagged off by actor Kishore Kumar G, MP Rajeev Gowda, and Quintiles India Head Naz Haji at St Joseph’s Indian High School.

Over 50 patients with rare diseases participated in the event. Among them was Nihal Bitla, a patient suffering from Progeria, who travelled from Mumbai to support the cause.

The walk was followed by several performances by patients. Nidhi Shirol, a patient suffering from Pompe Disease, and Jayanth Gowda, who suffers from MPS Type4, had the audience singing along and dancing to their music performances. The participants were in high spirits and tapped their feet to the music. 

Quintiles employees, the primary sponsors of Race for 7, performed Zumba.

Prasanna Kumar B Shirol, Founder Director, ORDI said, “This support from each one of you has given us a voice, which we hope reaches policy makers. We require everyone’s support to convert this hope into a resultant ‘Rare Disease Policy’.”