The Organization for Rare Diseases India (ORDI) announces the seventh edition of Racefor7, a 7km event to be held on February 27th to raise awareness for the rare disease community in India. Racefor7 symbolically represents the 7000 known rare diseases, the estimated 70 million rare disease patients in India, and the average of 7 years it takes to diagnose a rare disease. In keeping with the pandemic requirements, participants can run, walk or even cycle 7 kilometers wherever they are located to lend their support for rare diseases. Race for 7 is held every year in February to commemorate Rare Disease Day which falls on the last day of the month.
Speaking about the event, Prasanna Kumar Shirol, Co-founder and Executive Director of ORDI, said, “Individually there may be small groups of patients who suffer from a rare disease, but collectively 70 million patients in India is not a number that can be ignored. The challenges of the rarest disease patients are the same in terms of delayed diagnosis, little or no available treatment, the prohibitive cost of treatment when available, and public access to facilities and services. Over the last seven years, we have seen the positive impact of Racefor7 in raising awareness and creating advocacy for rare disease patients but much more needs to be done. While we now have a National Rare Disease Policy, the policy does not provide viable options for funding and treatment is still not accessible for most patients. We invite the public across the country to participate in this event to show they care for rare and help draw greater attention of policymakers and other stakeholders to the specific needs of rare disease patients.”
ORDI’s mission is to be the strong united voice for all rare diseases in India, to reduce inequalities, and ensure that people living with rare diseases have access to the same resources as the rest of the population.
Amit Mookim, Managing Director of IQVIA South Asia, main sponsors of Racefor7 said, “As sponsors of Racefor7 for the last seven years, it has been wonderful to see how the event has grown in reach and impact. Through our participation in the event, my employees and I have interacted with and heard stories of the challenges faced by rare disease patients. Rare Disease is an important area of focus for us at IQVIA and we remain committed to addressing the needs of patients and giving them hope for a better future. We wish this year’s event every success.”
