NEW DELHI, Mar 6:
In order to commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) would organise the 8th edition of Racefor7 on March 12 in New Delhi.
The annual event by ORDI would raise awareness about the rare disease community and advocate better policies and access to treatment for rare disease patients.
Speaking at the event, Dr Neerja Gupta, Additional Professor, Division of Genetics, Department of Pediatrics, AIIMS, New Delhi said “Rare diseases now have a special place among many other medical conditions, thanks to the declaration of rare disease policy and steps taken by the government towards its implementation”.
“Treatment without prevention is simply unsustainable,” and this is especially true for genetic diseases where prevention is possible through newborn screening and prenatal diagnosis” she said.
Congratulating ORDI members on their “unwavering commitment” to raising public awareness, she said “Despite diagnostic technological advancements, awareness of these conditions at the grassroots level is still required for suspicion and timely referral”
RaceFor7 is a seven kilometer walk/run/cycle symbolizing 7000 known rare diseases, on an average it takes 7 years to diagnose a rare disease and their are 70 million estimated rare diseases in India. The event is open to the general public and will see participation from rare disease patients and their families too.
Besides New Delhi, the event is being held in 12 other cities nationally including Davangere, Mysuru, Ahmedabad, Bengaluru, Mumbai, Kochi, Pune, Kolkata, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.
“We are thrilled to bring Racefor7 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” he added. “Racefor7 aims to create awareness and the need of preventive measures to contain Rare Diseases such as Consanguineous Marriages, Prenatal Tests, and Informed decisions about childbirth, New Born Screening, Precision Healthcare and Innovation etc. Thanks to the Central Government, today we have a National Policy for Rare Diseases” Prasana said.
Samir Sethi, Chairman of ORDI Advocacy Committee and President Indian Rett Syndrome Foundation said “Need of the hour is indigenous drug development for the rare diseases. The National Rare Disease Policy, 2021 states that pharmaceutical industries would be encouraged to develop drugs for rare diseases”. “Racefor7 is a step towards building awareness for rare diseases as also raising funds to meet the needs of the rare disease community” said the statement . (UNI)
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