@ Vikash Sharma | Sr Journalist
New Delhi: To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is holding the 8th edition of Racefor7®️ on March 12 in New Delhi. 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, RaceFor7 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. Dr Neerja Gupta, Additional Professor, Division of Genetics, Department of Pediatrics, AIIMS, New Delhi and Prasanna Kumar Shirol, Co-founder and Executive Director, ORDI addressed the media.
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.
*Dr Neerja Gupta, Additional Professor, Division of Genetics, Department of Pediatrics, AIIMS, New Delhi* comments on the race, “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. Despite diagnostic technological advancements, awareness of these conditions at the grassroots level is still required for suspicion and timely referral, which can facilitate early diagnosis and opens the possibility of timely initiation of therapy which is available for a few but evolving very rapidly, improving not only the patient’s but also the entire family’s quality of life. “Treatment without prevention is simply unsustainable,” and this is especially true for genetic diseases where prevention is possible through newborn screening and prenatal diagnosis. We congratulate ORDI members on their unwavering commitment to raising public awareness for recognizing, preventing, and caring for rare disorders through this walkathon.”
“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. 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, participate to make this movement bigger by creating more awareness about the Rare Disease patients in India.”
“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. The Department of Pharmaceuticals, Department for Promotion of Industry and Internal Trade (DPIIT) will be roped in to create a conducive policy framework for domestic pharmaceutical companies to focus on the research development and manufacturing of indigenous drugs for curing rare diseases”, comments *Mr Samir Sethi – Chairman -ORDI Advocacy Committee and President Indian Rett Syndrome Foundation*
Racefor7 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, policy makers, 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.