Bengaluru, Karnataka, India – February 19, 2025 – The Organization for Rare Diseases India (ORDI) announced the 10th edition of its flagship awareness run, Racefor7, taking place simultaneously in 21 cities across India on February 23, 2025. The launch event in Bengaluru unveiled this year’s national poster and theme, “For Rare, everywhere,” highlighting ORDI’s dedication to increasing awareness, accelerating treatment access, and strengthening partnerships with Rare Disease Centers of Excellence (COEs).
The Bengaluru event featured Dr. Meenakshi Bhat, a leading clinical geneticist, along with rare disease patients and caregivers. Discussions focused on the National Policy for Rare Diseases 2021, emphasizing the need for sustainable funding and effective implementation at both central and state levels to ensure treatment for eligible patients.
Dr. Bhat highlighted the policy’s provision of INR 50 lakhs for treatable rare disorders and noted the success of the Bengaluru COE in treating over 300 patients. She stressed the importance of early diagnosis and treatment and urged continued government support for sustained therapies.
Prasanna Shirol, Co-founder and Board Director of ORDI, underscored the ongoing need for advocacy, improved policy implementation, and sustainable funding. He emphasized Racefor7’s role in uniting stakeholders and the organization’s focus on engaging state governments for faster policy implementation and sustainable treatment funding.
Representatives from Roche, the event’s main sponsor, expressed their support for ORDI’s mission. Dr. Monica Puri, Chief Country Access & Policy Officer, Roche, commended Racefor7 for raising awareness and showing solidarity with patients and families. Rahul Kamath, Chief Operating Officer, Roche, highlighted the increasing prevalence of rare diseases and the importance of creating social and clinical awareness for early diagnosis and better quality of life.
Racefor7 aims to reach even more people this year, encouraging participation from rare disease advocates, healthcare leaders, and advocacy groups. The event calls for sustained awareness and policy action.
Individuals across India are encouraged to register and participate in Racefor7 2025 to support the rare disease community. The goal is to have over 10,000 participants run 7 kilometers, symbolizing the 7,000 known rare diseases.
Join the movement. Run for the 7000. Run for Rare.
For registrations and city-specific details, please visit:
