BENGALURU, 16th February 2023:To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is holding the 8th edition ofRaceFor7® on Sunday, February 26th in Bengaluru. An annual event by ORDI to raise awareness for the rare disease community and advocate better policies and access to treatment for rare disease patients, Race For 7 is a seven-kilometer walk/run/cycle symbolizing 7000known rare diseases, the average of 7 years it takes to diagnose a rare disease and the 70 million estimated rare diseases patients in India. The event is open to the general public and will see participation from rare disease patients and their families too. Registration details are available at racefor7.com.
Besides Bengaluru, the event is being held in 12 other cities nationally includingDavangere, Mysuru, Ahmedabad, Mumbai, Kochi, Pune, Kolkata, New Delhi, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.
“We are thrilled to bring Race for 7 back to an in-person event after a virtual event the last two years because of the pandemic,” said Prasanna Kumar Shirol, co-founder and Executive Director, ORDI. “Racefor7 is one of the world’s largest multi-city events to raise mass awareness about Rare Disease. Racefor7 aims to create awareness and the need of preventive measures to contain Rare Diseases such as Consanguineous Marriages, Prenatal Tests, and Informed decision about childbirth, New Born Screening, Precision Healthcare and Innovation etc.
Thanks to the Central Government, today we have a National Policy for Rare Diseases. This is just the beginning of recognition of Rare Diseases in India. We still need to address the many challenges that this patient community faces like complete care and support for all Rare Diseases, Local Drug Development, and Insurance Coverage etc. It’s time that all the state governments come forward and take the initiative to join hands with the central Government and extend support from their side. This calls for more support and we request all of you to come forward, and participate to make this movement bigger by creating more awareness about the Rare Disease patients in India.”
Amit Mookim, Vice President and General Manager, South Asia IQVIAsaid, “We at IQVIA are fully committed to supporting the cause for rare diseases and the Race for 7 is a fantastic initiative to bring patient and their families, IQVIANs, our clients and communities to come together to build more awareness around rare diseases – much needs to be done and this initiative is part of our contribution to continue supporting patients and their families to create an impetus for continued research, support and awareness around the country.”
Dr. Meenakshi Bhat, Clinical Geneticist at the Centre for Human Genetics in Bengaluru, discussed the 2021 National Policy for Rare Diseases (NPRD). The Central Government announced a one-time financial support of up to Rs 50 lakhs per individual with a rare condition under this scheme for treatment-eligible individuals. The government has just awarded funds for the first 22 approved patients in Karnataka with curable illnesses, and these children have commenced treatment at the Centre of Excellence for Rare Disorders, Indira Gandhi Institute of Child Health, Bengaluru.
Race for7 is a step towards building awareness for rare diseases as also raising funds to meet the needs of the rare disease community. Globally, Rare Disease Day is observed every year on the last day of February Month. It plays a critical part in building an international rare disease community that is multi-disease, global, and diverse but united in purpose. Though Rare Disease Day is patient-led, everyone including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention. Racefor7® is one such event in India.
