To draw attention to the needs of patients with rare diseases in India, the Organisation for Rare Diseases India (ORDI) will organise ‘Race for 7’, a 7-km run on February 28 that is observed as Rare Disease Day.
The run that will be flagged off at St. Joseph’s Indian High School in the city will target 7,000 people to symbolically represent 7,000 documented rare diseases expressing solidarity with patients.
Prasanna Kumar B. Shirol, Founder Director, ORDI, and the father of a teenager with a rare disease said on Friday that the objective behind Race for 7 is to raise awareness about rare diseases and the needs and challenges of those suffering from the same. There are an estimated 70 million Indians who suffer from rare diseases.
This implies that 1 out of 20 Indians suffers from one or the other such disease.
“Race for 7 will raise funds to help ORDI in its mission to improve the health of patients with rare diseases across India through awareness, advocacy, collaborations and information dissemination,” he said.
Patients who also spoke at the press conference highlighted the challenges they faced in living with a rare disease and appealed for support in creating awareness about the run. Registrations can be done on http://racefor7usa.com and http://racefor7usa.com/registration.
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