ORDI’s Flagship Run “Racefor7” Returns to Raise Awareness on Rare Diseases

Organization for Rare Diseases India (ORDI) to host a marathon across 15 cities to spread awareness about rare diseases in India

Bengaluru, February 12, 2024: The Organization for Rare Diseases India (ORDI) is set to host its annual flagship event, “Racefor7” across 15 cities in India on February 25. The primary objective of the  7 kilometers marathon is to raise awareness on 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 in alignment with World Rare Diseases Day. Since its inception in 2016 in Bengaluru, the event has expanded nationwide, with an expected participation of over 20,000 individuals this year scheduled on February 25 across the cities of Bengaluru, Mumbai, Delhi, Hyderabad, Kolkata, Ahmedabad, Chennai, Kochi, Pune, Mysuru, Davangere, Hubballi, Asansol, Kozhikode, Coimbatore in line with the theme ONE NATION, ONE DAY – TOGETHER FOR RARE.

The Bangalore run will commence from St. Joseph’s Indian High school ground, Ashok Nagar. The run will be flagged off by notable Kannada cinema actor Mr. Ramesh Aravind and commence at 7 am. Interested participants can register by visiting the Racefor7 website.

“I am honoured to support the cause of Rare Diseases and participate in Racefor7. One Nation One Day – Together for Rare, join me in this multi-city marathon on Sunday, February 25, starting at 7:00 am onwards across India. Every step we take brings us closer to raising awareness and finding solutions for our patients with Rare Diseases,” said Mr Ramesh Aravind, actor, director, screenwriter and television presenter who works in Kannada films and television.

“We are proud to continue our longstanding partnership with ORDI as the main sponsor of the Racefor7 marathon for the past eight years. This event reflects our commitment to supporting rare disease communities and raising awareness about their unique challenges. We look forward to another successful marathon and the opportunity to make a meaningful difference together,” said Mr. Jinu Jose, Vice President, Research & Development Solutions, India.

Speaking about the event, Dr. Meenakshi Bhatt, Professor & Mazumdar-Shaw Research Chair, Centre for Human Genetics ORDI, stated, “We have been encouraged by a positive movement in the country with the provision of ₹50 lakhs one time support per patient for treatment under the National Policy for Rare Diseases. Many patients have already been enrolled under this policy. The Center of Excellence (COE) from Indira Gandhi Institute of Child Health and Centre for Human Genetics, Bengaluru have achieved a significant milestone by enrolling nearly 150 patients for treatment under this policy. However, there are still many hurdles and a long way to go. Events like Racefor7 play a crucial role in sensitizing stakeholders, particularly the medical fraternity and the patient community. They draw attention to the challenges posed by rare diseases and to seek solutions through joint participation. I appeal to many more people to join the race and show support and solidarity in our collective efforts to improve the care of individuals affected with rare diseases. “

Mr. Prasanna Kumar Shirol, Co-founder & Executive Director of ORDI, 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 INR 699, while students can register at a discounted rate of INR 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.