The 8th edition of the 7 km event for the rare disease community & being held in Ahmedabad on February 19
Ahmedabad , 15th February 2023: To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is bringing the 8th edition of RaceFor7® & in Ahmedabad it is being organized on Sunday February 19h. 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 7000 known 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 Ahmedabad, the event is being held in 12 other cities nationally including Bangalore – our base office, Davangere, Mysuru, Mumbai, Kochi, Pune, Kolkata, New Delhi, Chennai, Hyderabad, Lucknow and Thiruvananthapuram. The Ahmedabad event is being held on February 19th – Sunday at New LJ Campus, LJ University, Off S G Road, Makarba from 6.00 AM onwards. Over 500 + enthusiasts who support the cause of raising awareness on Rare diseases have registered for the Walkathon which would be flagged off by Hon’ble Minister of State and Home – Shri Harsh Sanghvi and other key dignitaries.
“We are thrilled to bring Race for 7 back to an in-person and on ground event after a virtual event the last two years due to 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 child birth, 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, participate to make this movement bigger by creating more awareness about the Rare Disease patients in India,” he added further.
Amit Mookim, Vice President and General Manager, South Asia IQVIA said, “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.”
“I congratulate ORDI and Mr. Prasanna Shirol for putting tireless days and hours for this community of rare diseases affected families. Not only social recognition but fighting for their justice of equality and improving quality of life is a commendable initiative . I am also aware that our government is also thinking positively to help such needy patients. I wish ORDI best of luck for this walkathon and wish that they will create more support and awareness among the society for building a healthy nation.” said Dr. Rakesh Joshi, (Medical superintendent – Civil Hospital)
Dr. Chetan Trivedi, Academy of Paediatrics, Gujarat shared, “Rare diseases’ awareness is very important, not only for the general public but also for healthcare professionals, especially paediatricians! As the name suggests these diseases are rare and hence it is difficult for paediatricians to diagnose in early stages of the disease! An early diagnosis & timely intervention will help to prevent morbidity & mortality of patients suffering from such rare diseases. Timely intervention will help to improve the quality of life of such patients. We at the Academy of Paediatrics Gujarat, an association of 2300 paediatricians of Gujarat state wholeheartedly support this endeavour of public awareness initiative – Race for 7 organized by ORDI.”
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
