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NGO to organise a race to raise funds for rare disease patients

BENGALURU: The Organization for Rare Diseases India (ORDI) would organise Race for 7, a unique first of its kind event to commemorate Rare Disease Day and draw attention to the needs of rare disease patients in India.

The 7km run to be flagged off on February 28 at St. Joseph’s Indian High School will target 7000 people to symbolically represent 7000 documented rare diseases matching strides and expressing solidarity with patients.

Prasanna Kumar B Shirol, Founder Director, ORDI and the father of a young teenager with a rare disease said, “It is ironic that while the number of patients with rare diseases is increasing every year, there is no treatment for more than 90% of the diseases and patients can, at best, depend only on supportive therapy. Awareness, accessibility and affordability are key needs of patients suffering from rare disease. The Rare Disease Day 2016 theme ‘Patient Voice’ recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. We hope Race for 7 will bring the patient’s voice to the fore.”

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