Bangalore: ‘Race for 7’, an initiative championed by the Organization for Rare Diseases India (ORDI), was organized in Bangalore on February 24th to raise awareness for rare disease patients, 50% of whom are children.A large number of Bangaloreans, participated in the run and came to support rare disease patients. Race for 7, a first of its kind event for rare diseases in the world, symbolically represents 7000 rare diseases with 7000 people running for 7 kilometers to represent the average number of years it takes to diagnose a rare disease.
Although an estimated 1 in 20 Indians suffers from a rare disease, lack of awareness and information has created several challenges for patients and their caregivers, most importantly delayed diagnosis, affordable and targeted care and treatment and access. Besides members of the general public, several rare disease patients and their families participated in ‘Race for 7’ to draw attention to the challenges faced by rare disease patients, especially children, and the urgency for governments and other institutions to recognize their unique needs and create enabling policies and a more supportive environment for them.
Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient, says: “50% of all rare disease patients are children. This is a fact not many are aware of and supports our urgency of spreading awareness about rare diseases. In fact, 1 in every 20 Indians, is a rare disease patient. Besides lack of access to early intervention and treatment because of the lack of widespread awareness about rare diseases, the cost of treatment where available is often prohibitively expensive. Therefore, we urgently need national and state policies that address the unique requirements of the rare disease community and enable them to lead lives of dignity and self-worth. We also need institutions like corporates and schools and colleges to create a more inclusive environment for rare disease patients.”
“Awareness about rare diseases has to reach every village, every household,every individual. The Race for 7 initiative by ORDI has my complete support and endorsement,” says Shwetha R Prasad, Actress.
“IQVIA is delighted to be associated for the fourth consecutive year as the main sponsor of Race for 7, an event that has been growing in stature and impact. While rare diseases, by virtue of their definition, affect relatively fewer number of patients, the overall number of rare disease patients is large enough to warrant more focused attention. We hope that the public will come forward in large numbers to participate in Race for 7 and help amplify the voice of the rare disease community. Race for 7 is a unique way of engaging the community with those who matter most –patients and their caregivers – for a common cause,” said Amit Mookim, Managing Director, IQVIA – South Asia. Rare Diseases is a key therapeutic focus for IQVIA who has provided clinical services for more than 258 rare disease studies in 87 countries worldwide since 2011.
