Ahmedabad to Host Racefor7 on February 23 at LJ University to Advocate for Rare Disease Awareness
Urgent Need for Greater Awareness and Policy Implementation for Rare Diseases in India
BILKULONLINE
Ahmedabad, Feb 23: The Organization for Rare Diseases India (ORDI) has launched the 10th edition of its flagship annual awareness run, Racefor7, unveiling this year’s national theme, “For Rare, Everywhere.” The initiative underscores ORDI’s dedication to raising awareness, expediting treatment, and enhancing collaborations with Centers of Excellence (COEs) for Rare Diseases across India.
For the first time, Racefor7 will take place simultaneously in 21 cities across India. The Ahmedabad edition is scheduled for Sunday, February 23, at LJ University, S.G. Highway. The event will serve as a platform for crucial discussions on the implementation of the National Policy for Rare Diseases 2021 and the need for sustainable funding to support affected patients.
Dr. Meenakshi Bhat, a pioneering clinical geneticist at The Centre for Human Genetics, Bangalore, highlighted the importance of early diagnosis and treatment. She stated, “Under the National Rare Disease Policy 2021, eligible individuals with treatable rare disorders can receive up to INR 50 lakh for treatment. Our goal at the Bengaluru Centre of Excellence is to increase awareness among families and ensure timely enrollment for the best outcomes. We also hope the government ensures continuous, definitive, and supportive therapy for eligible patients.”
Prasanna Shirol, Co-founder and Board Director of ORDI, stressed the urgency of better policy implementation and sustainable funding for rare disease patients. He remarked, “Racefor7 has successfully brought together key stakeholders to drive change. This year, we aim to strengthen engagement with State Governments since health is a state subject. Faster implementation of policies and sustainable treatment funding are critical. Through a multi-stakeholder approach, we are working to build a unified voice for broader policy direction.”
Dr. Monica Puri, Chief Country Access & Policy Officer at Roche, commended the initiative, saying, “Racefor7 is a powerful platform to raise awareness and advocate for better healthcare access, ensuring no one is left behind.”
Rahul Kamath, Chief Operating Officer of Roche, the main sponsor of the event, echoed similar sentiments, adding, “Kudos to ORDI for leading this awareness drive. As Roche, we are privileged to support this initiative and contribute to a vision of better care.”
Since its inception in 2016 in Bengaluru, Racefor7 has evolved into a nationwide event, symbolizing the 7,000 known rare diseases with over 7,000 participants running 7 kilometers. This year’s edition is expected to attract over 10,000 participants across multiple cities on February 23, 2025.
ORDI has extended invitations to Health Ministers and key stakeholders from various states to strengthen collaborations and ensure broader participation in the fight against rare diseases.
