Organization for Rare Diseases India Announces the 7th Edition

KOCHI:
The Organization for Rare Diseases India (ORDI) announces the seventh edition of Racefor7, a 7km event being held on Sunday, February 27 th 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 most rare 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 policy makers and other stakeholders to the specific needs of rare disease patients.”

All participants will receive a t-shirt bearing the name of one rare disease to help spread awareness, finisher medals and e-certificates. 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.

Said Amit Mookim, Managing Director of IQVIA South Asia, main sponsors of Racefor7, “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 of a better future. We wish this year’s event every success”

To participate in this race, register at https://racefor7.com/ . Registrations close on February 20 th . Rare Disease Day which takes place on the last day of February each year is the globally- coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse, but united in purpose.

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