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Racefor7: Over 4000 participants virtually unite to raise awareness for rare diseases
In the backdrop of 70 million rare disease patients in India, Organization for Rare Diseases India (ORDI) through the event hopes to create opportunities for more voices from the rare disease community to be heard across all stakeholder
Bengaluru: Racefor7, an annual initiative by Organization for Rare Diseases India (ORDI) to raise awareness for rare diseases in India was flagged off by Para-athlete and Limca Record holder K.Y. Venkatesh, in Bangalore. The event was held virtually, uniting over 4000 participants from 200 cities across the country to raise their voices for the rare disease community. Also, present on the occasion were Kannada film actress, Ms. Shweta Prasad, Dr. Meenakshi Bhat, Clinical Geneticist, Centre for Human Genetics (CHG). Racefor7 is held each year on the last day of February, typically on 28th/29th February to commemorate World Rare Disease Day.
Para-athlete and Limca Record holder K.Y. Venkatesh said, “I have traveled with this Rare Cause since the very beginning. I feel it’s a great opportunity to be part of this mega event and show my support for Rare Diseases.” He also conveyed a heartfelt message from Mr. C.N Ashwat Narayan, Deputy CM, Karnataka where he expresses support both from him and the government towards Rare Disease patients.
Dr. Meenakshi Bhat, Clinical Geneticist, Centre for Human Genetics (CHG) said “I have been privileged to be part of Racefor7 for the past 6 years. I am glad that the support from across the nation has grown tremendously. There are more than 7000 Rare Diseases of which some are invisible diseases making it a challenge for early diagnosis; every day becomes challenging for the family dealing with it. However, I have seen so many families and patients break their obstacles and shine out as an inspiration for society. This is the change that Racefor7 has created; it is such proud moments that give clinicians like us joy and gratification”
Over the last six years, Racefor7 has witnessed participation from stakeholders across the rare disease community, including patients, and the general public. In India, the primary challenge is a lack of awareness amongst the public about rare diseases. Moreover, there is stigma around the disease that makes it impossible for rare disease patients to lead lives of self-worth and dignity. Changing the scenario of the rare disease community in India is certainly not a one-day task. ORDI hopes to create opportunities for more voices from the rare disease community to be heard across all stakeholders so that they can lead a life of dignity and equality.
“Racefor7 has had a big role to play in drawing attention of the public at large to the needs of the rare disease community and we have seen its positive impact over the years.” said Prasanna Shirol, Founder Director, ORDI. “But more needs to be done, most importantly in terms of a policy for rare diseases and orphan drugs and we hope we will see it implemented in 2021.”
This year the annual event aimed at virtually uniting people from across the country and more to stand in support towards the needs of the rare disease community and enable them to lead lives of dignity. With a proud message of Rare is many, rare is strong and rare is proud, the event seeks to promote access, inclusivity, and de-stigmatization around rare diseases.
