RaceFor7 Expands to Mangalore for the First Time: A Run to Raise Awareness for Rare Diseases
Mangalore: The Organization for Rare Diseases India (ORDI) is set to host the 10th edition of its flagship event, RaceFor7, in Mangalore for the first time. This symbolic run aims to raise awareness about the 7,000 known rare diseases while advocating for better treatment access and policy implementation. Mangalore’s inaugural RaceFor7 is being organized in collaboration with Yenepoya (Deemed to be University) as the City Partner and Arunya Foundation (R.) as the Event Partner. Over 200 participants are expected to join the cause in the city.
RaceFor7 will take place on February 23, 2025, simultaneously with 21 other cities across India. The event, in line with this year’s theme, “For Rare, Everywhere,” aims to bring together patients, caregivers, medical professionals, and advocates to amplify awareness and drive policy change.
Yenepoya (Deemed to be University) Supports the Rare Disease Community
Speaking about Yenepoya’s partnership with RaceFor7, Dr. Gangadhar Somayaji, Registrar, Yenepoya (Deemed to be University) said:
“As a pioneering institution committed to healthcare and medical research, Yenepoya (Deemed to be University) is honored to support RaceFor7 in Mangalore. This initiative aligns with our mission to promote awareness, early diagnosis, and treatment accessibility for rare diseases. We believe that education and advocacy play a crucial role in improving healthcare outcomes, and we are proud to contribute to this noble cause.”
Advocacy and Awareness: The Need for Policy Action
Dr. Meenakshi Bhat, Teaching Faculty, Centre for Human Genetics, Bangalore, emphasized the importance of early diagnosis and treatment access under the National Rare Disease Policy 2021:
“Under the National Rare Disease Policy 2021, every individual affected with a treatable rare disorder is eligible to INR 50 lakhs towards treatment costs. In the Bengaluru Centre of Excellence for Rare Diseases (jointly between Centre for Human Genetics and Indira Gandhi Institute of Child Health), over 300 patients with rare diseases from all over Karnataka are receiving specific therapies. In the tenth year of ‘Race for Seven’ organized by ORDI, the aim is to make more families with rare diseases aware of treatment options and enroll them early for the best outcomes. We also hope that the Government will make it possible for eligible patients to receive sustained, continuous definitive treatment as well as supportive therapy.”
Prasanna Shirol, Co-founder and Board Director, ORDI, highlighted the importance of multi-stakeholder engagement in advancing the cause:
“There is an urgent need for greater awareness, better policy implementation, and sustainable funding support systems for rare disease patients in India. RaceFor7 has successfully brought together key stakeholders who can drive change. This year, we aim to make an even bigger impact by reaching out to State Governments since health is a State Subject. There is a dire need for faster implementation of policy and the establishment of sustainable funding for treatment. We are working towards building a unified voice through a multi-stakeholder approach for broader policy direction.”
About ORDI:
The Organization for Rare Diseases India (ORDI) is a patient-centered non-profit organization committed to addressing challenges faced by people with rare diseases in India. Through advocacy, awareness, and patient support initiatives like RaceFor7, ORDI aims to create a sustainable ecosystem for rare disease treatment and policy development.
About Yenepoya (Deemed to be University)
Yenepoya (Deemed to be University) the NAAC A+ Accredited University is a beacon of academic excellence in Mangalore, India. The University spread over five campuses across Coastal Karnataka imparts world-class education in Medicine, Dentistry, Nursing, Physiotherapy, Allied Healthcare, Faculty of Science, Pharmacy, Ayurveda, Naturopathy & Yogic Science, Homeopathy, Art & Social Sciences, and Commerce & Management, and Engineering.
Yenepoya (Deemed to be University) ranked 95 in India by the NIRF 2024, with the Dental College Ranking 26th among the top Dental Institutions in the country in the same year. The university offers world-class faculty and cutting-edge infrastructure, ensuring future-ready graduates across 11 Constituent Institutions.
National Accreditation Board for Hospitals (NABH), recognized and published ‘The Sustainability & Green Initiatives’ of Yenepoya (Deemed to be University) in their Guidebook for Climate Action & Sustainability in Health Care.
Arunya Foundation: Committed to Social Impact
Arunya Foundation (R.), a non-profit organization dedicated to healthcare, education, and social welfare, is proud to support RaceFor7 in Mangalore. The foundation works towards bridging gaps in medical accessibility and community well-being through various initiatives, including rural healthcare outreach and advocacy efforts.
Join the Movement
RaceFor7 invites the people of Mangalore to participate and stand in solidarity with the rare disease community. Registrations are open, and interested individuals can sign up at https://registration.racefor7.
Event Details:
- Venue: Yendurance Sports Zone, Yenepoya University
- Reporting Time: 6:00 AM
- Introduction: 6:10 AM
- Zumba Warm-up: 6:15 AM
- Flag-off: 6:30 AM
Participants can choose between the regular 7K run and an extended 10K run for those interested in pushing their limits.
Route Map:
Start: Yendurance Sports Zone – Yenepoya University Entrance – Left towards Kuthar Junction – U-turn towards Mangalore University – U-turn at Kanachur Public School (7K) / U-turn at Naringana Cross (10K) – Return to Yendurance Sports Zone.