Hyderabad, March 14, 2023:To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is holding the 8th edition of Racefor7® on March 19that People’s Plaza, Necklace Road, Hyderabad. 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. Dr Ashwin Dalal, Head, Diagnostics Division, Centre for DNA Fingerprinting and Diagnosticsaddressed the media.
Besides Hyderabad, the event is being held in 12 other cities nationally includingDavangere, New Delhi, Ahmedabad, Bengaluru, Mumbai, Kochi, Pune, Kolkata,Chennai, Mysuru, 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,”saidPrasanna 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.”
Dr Ashwin Dalal, Head, Diagnostics Division, Centre for DNA Fingerprinting and Diagnosticscomments at the occasion, “Rare diseases are a group of over 7,000 diseases that affect more than 300 million people worldwide. Raising awareness about rare diseases is essential since these diseases are often so rare, they can be difficult to diagnose by different clinicians, and people affected by them may have trouble finding appropriate medical care. There are often so few people affected by a particular rare disease and hence funding for research into its causes, treatments, and potential cures may be limited. Awareness can help people to be educated about the risks and be informed about the available resources for genetic counseling and testing. Raising awareness about rare diseases is an ongoing effort, and it requires the support of individuals, organizations, and communities to make a difference. There is an urgent need to raise awareness about Rare & Genetic Disorders. ORDI has been conducting Mass Awareness program Racefor7 for past 8 years. This year, the RACEFOR7 is being held at Hyderabad for the first time. The event aims to significantly boost the awareness about Rare Diseases.”
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.”
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 FebruaryMonth. It plays a critical part in building an international rare disease community that is multi-disease, global, and diversebut 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.