15 cities to host ORDI’s flagship run ‘Racefor7’ to raise awareness in India on rare diseases on Feb 25

•  The Ahmedabad run will commence at 7 am at L J University, L J Campus, Near Sanand Chowkadi Makarba
• The Chennai run will commence at 7 am at Sri Ramachandra Institute Of Higher Education & Research, Porur
• The Bengaluru run will commence at 7 am at St Joseph’s Indian High School ground, Ashok Nagar
• Organization for Rare Diseases India (ORDI) to host a marathon to spread awareness about rare diseases in India
• The fee for regular runners is Rs 699, while students can register at a discounted rate of Rs 399
• Rare disease patients and individuals with different abilities, along with two caregivers each, can participate free of charge

NE HEALTH BUREAU

AHMEDABAD, FEB 20

The Organization for Rare Diseases India (ORDI) on Tuesday announced it is set to host the annual flagship event, “Racefor7”, across 15 cities in India on Sunday, February 25. The primary objective of the 7 kilometers marathon is to raise awareness about rare diseases and provide patients and their families with access to national and international resources, empowering them in the process.

Racefor7 is an annual awareness run organized on the World Rare Diseases Day. Since its inception in 2016 in Bengaluru, the event has expanded nationwide. This year over 20,000 people will participate in the event scheduled on February 25. The race will flag off simultaneously across 15 cities. The names and details of the marathon are given below. The theme ONE NATION, ONE DAY – TOGETHER FOR RARE will come alive with patients, caregivers and families, medical professionals and the general public coming together to support the cause.

Commenting on this, Amit Mookim, Managing Director, IQVIA South Asia, said, “IQVIA has extensive experience in the rare diseases space, and we provide strategic and clinical research solutions to our customers. We are committed to bring innovation in this area to enable better diagnosis and treatment for patients with life-threatening diseases. This run echoes our ethos, and we have been supporting it for close to a decade now. We believe this run not only helps to create the necessary awareness for rare diseases, which is currently very limited, it also encourages us to push our own boundaries for a healthier lifestyle.”

Speaking about the event, Sangeeta Barde, Director, Organization for Rare Diseases India, stated, “Raising awareness about rare diseases is an ongoing effort. We have been doing it for almost two decades and fighting a good fight for patients of rare diseases. On our journey, we got the support of many like-minded people, organizations, and communities who wanted to make a difference, and they continue to be with us. Racefor7 is one of our unique initiatives to build awareness for rare diseases. It is not the race it is a movement to bring rare diseases to the forefront of healthcare. It also enables us to raise much-needed funds to meet the diverse needs of the rare disease community. We appeal to all of you to come forward and participate to make this movement bigger and bigger.”

Prasanna Kumar Shirol, Co-founder & Executive Director, Organization for Rare Diseases India, commented, “Racefor7 stands as the sole mass awareness initiative in India for the past 8 years. This event has played a pivotal role, both directly and indirectly, in the comprehensive development of the Rare Disease ecosystem in India. By capturing the attention of policymakers, stakeholders, and the global community, Racefor7 has positioned India on the global map in the field of Rare Diseases. This year’s Theme is ONE NATION, ONE DAY- TOGETHER FOR RARE emphasizes an amplified movement for all the stakeholders across the country, uniting for the support of rare disease patients. The focus is on enhancing access to therapies under policy guidelines, establishing an ecosystem for long-term care and support, fostering research and development, and ultimately creating a collective moment of ‘I care for Rare..”

The fee for regular runners is Rs 699, while students can register at a discounted rate of Rs 399. Rare disease patients and individuals with different abilities, along with two caregivers each, can participate free of charge. Participants in this category will receive a kit containing a T-shirt, a medal, an e-certificate, and complimentary breakfast.