Join Hands with ‘RaceFor7®’ – ORDI’s Run for Rare Diseases

BENGALURU, sixteenth February 2023:To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is holding the eighth version ofRaceFor7® on Sunday, February twenty sixth in Bengaluru. An annual occasion by ORDI to lift consciousness for the uncommon illness group and advocate higher insurance policies and entry to remedy for uncommon illness sufferers, Race For 7 is a seven-kilometer stroll/run/cycle symbolizing 7000known uncommon ailments, the common of seven years it takes to diagnose a uncommon illness and the 70 million estimated uncommon ailments sufferers in India. The occasion is open to most people and can see participation from uncommon illness sufferers and their households too. Registration particulars can be found at racefor7.com.

Besides Bengaluru, the occasion is being held in 12 different cities nationally includingDavangere, Mysuru, Ahmedabad, Mumbai, Kochi, Pune, Kolkata, New Delhi, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.

“We are thrilled to deliver Race for 7 again to an in-person occasion after a digital occasion the final two years due to the pandemic,” mentioned Prasanna Kumar Shirol, co-founder and Executive Director, ORDI. “Racefor7 is likely one of the world’s largest multi-city occasions to lift mass consciousness about Rare Disease. Racefor7 goals to create consciousness and the necessity of preventive measures to include Rare Diseases reminiscent of Consanguineous Marriages, Prenatal Tests, and Informed choice about childbirth, New Born Screening, Precision Healthcare and Innovation and so forth.
Thanks to the Central Government, as we speak we’ve a National Policy for Rare Diseases. This is only the start of recognition of Rare Diseases in India. We nonetheless want to deal with the various challenges that this affected person group faces like full care and assist for all Rare Diseases, Local Drug Development, and Insurance Coverage and so forth. It’s time that each one the state governments come ahead and take the initiative to hitch fingers with the central Government and prolong assist from their facet. This calls for extra assist and we request all of you to return ahead, and take part to make this motion larger by creating extra consciousness concerning the Rare Disease sufferers in India.”

Amit Mookim, Vice President and General Manager, South Asia IQVIAsaid, “We at IQVIA are totally dedicated to supporting the trigger for uncommon ailments and the Race for 7 is a improbable initiative to deliver affected person and their households, IQVIANs, our shoppers and communities to return collectively to construct extra consciousness round uncommon ailments – a lot must be performed and this initiative is a part of our contribution to proceed supporting sufferers and their households to create an impetus for continued analysis, assist and consciousness across the nation.”

Dr. Meenakshi Bhat, Clinical Geneticist on the Centre for Human Genetics in Bengaluru, mentioned the 2021 National Policy for Rare Diseases (NPRD). The Central Government introduced a one-time monetary assist of as much as Rs 50 lakhs per particular person with a uncommon situation beneath this scheme for treatment-eligible people. The authorities has simply awarded funds for the primary 22 authorised sufferers in Karnataka with curable diseases, and these youngsters have commenced remedy on the Centre of Excellence for Rare Disorders, Indira Gandhi Institute of Child Health, Bengaluru.

Race for7 is a step in direction of constructing consciousness for uncommon ailments as additionally elevating funds to fulfill the wants of the uncommon illness group. Globally, Rare Disease Day is noticed yearly on the final day of February Month. It performs a crucial half in constructing a world uncommon illness group that’s multi-disease, international, and various however united in function. Though Rare Disease Day is patient-led, everybody together with people, households, caregivers, healthcare professionals, researchers, clinicians, policymakers, business representatives and most people can take part in elevating consciousness and taking motion as we speak for this susceptible inhabitants who require speedy and pressing consideration. Racefor7® is one such occasion in India.