BENGALURU, February 23rd, 2025:
The Organization for Rare Diseases India (ORDI) held the 10th edition of its flagship annual awareness run, Racefor7. This 7-kilometer marathon aims to raise awareness about rare diseases and improve access to medical treatment and resources for patients and their families. This year, over 8300 participants, including patients and caregivers, took part in the run across 21 cities.
The Bengaluru run kicked off at 6:00 AM from St. Joseph Indian High School Ground, with renowned Shweta R Prasad flagging off the event. Over 3000 participants came together to support the cause in the city. Since its launch in Bengaluru in 2016, the event has grown into a nationwide movement. This year, under the theme “For Rare, everywhere”, the run took place simultaneously across multiple cities, including Bengaluru, New Delhi, Mumbai, Hyderabad, Chennai, Kolkata, Ahmedabad, Chandigarh, Jaipur, Thiruvananthapuram, Kochi, Pune, Mysuru, Mangalore, Alwar, Vrindavan, Pali, Jammu, Asansol, Bhatinda and Thrissur.
Racefor7 is an annual awareness run/walk held to commemorate World Rare Diseases Day, which falls on the last day of February each year. This global initiative aims to raise awareness among the public and policymakers about the challenges faced by individuals living with rare diseases. In 2025, World Rare Diseases Day will be observed on Friday, 28th February.
Adding to the discussions, Prasanna Shirol, Co-founder and Board Director, Organization for Rare Diseases India (ORDI), said, “I extend my heartfelt gratitude to the people of Bangalore and 20 other cities for standing with rare disease patients and caregivers. Through Race for 7, the people have embodied the spirit of “For Rare, everywhere”. This support reminds us that we are not alone and strengthens our voice in reaching policymakers and stakeholders and elevating awareness across India.
For the past 10 years Racefor7 has been strong catalyst in raising awareness and amplifying the voice of Rare Diseases Community to all the Stakeholders and General Public. This event is supported by 25 Registered Patient Advocacy Groups across the country, and over 30 Reputed Medical Institutions including Center of Excellence for Rare Diseases thus uniting India for Rare. ”
Dr Ann Agnes Mathew, Consultant Paediatric Neurologist and Neuromuscular Specialist, said, “As we mark the 10th edition of Race for 7, let’s come together to show the world that India stands united in supporting families affected by rare diseases. For the past decade, Race for 7 has been dedicated to this cause, striving to create awareness and drive change.
Moving forward, we hope for greater support from the government, especially for Group 3 rare diseases, which impact thousands of Indians. Early intervention can transform lives, empowering individuals to become active, contributing members of society.”
Speaking about the event, Shwetha R Prasad, famous Kannada Television and movie actor, commented, “My journey with ORDI India began 10 years ago, and it’s been incredible to see how a small community has now expanded across 21 cities. It’s truly heartening to witness more people becoming aware of rare diseases and spreading the message. While this progress is encouraging, we still need greater support from both the public and the government. I remain hopeful that this movement will continue to grow with more support and compassion.”
A spokesperson from Roche, the main sponsor of the event, said, “Racefor7 is a remarkable initiative that brings together communities, caregivers, and advocates to spotlight the challenges faced by rare disease patients. This event is a testament to the collective effort required to drive awareness and policy change. At Roche, we are committed to supporting ORDI’s mission and working towards equitable healthcare access. By fostering collaboration between stakeholders, we can accelerate diagnosis, improve treatment accessibility, and make a lasting impact on the rare disease community.”
Racefor7 aims to drive policy-level impact and improve access to treatment across India. Through awareness, advocacy, and collaboration with policymakers, the focus is to accelerate diagnosis and pushing for better healthcare solutions for the rare disease community.”