10th Edition of ‘Racefor7’ to Raise Awareness on Rare Diseases Across 21 Cities

Bengaluru : The Organization for Rare Diseases India (ORDI) has announced the 10th edition of its flagship awareness run, Racefor7, which will take place on February 23 across 21 cities simultaneously. The event aims to amplify awareness about rare diseases, advocate for better treatment accessibility, and strengthen collaborations with Centers of Excellence (COEs) for Rare Diseases across India.

The initiative, launched in 2016 in Bengaluru, symbolises the 7,000 known rare diseases, with over 7,000 participants running 7 kilometers to represent the cause. This year, participation is expected to exceed 10,000.

The event features leading experts, patients, and caregivers, who stressed the need for sustainable funding and effective implementation of the National Policy for Rare Diseases, 2021.

Dr Meenakshi Bhat, a clinical geneticist at the Centre for Human Genetics, Bengaluru, highlighted the existing provision under the policy, which allocates ₹50 lakh per patient for treatable rare diseases. She noted that over 300 patients in Karnataka are currently benefiting from this initiative at the Bengaluru Centre of Excellence for Rare Diseases, jointly operated by the Centre for Human Genetics and the Indira Gandhi Institute of Child Health. However, she called for continuous, sustained treatment and supportive therapy for eligible patients to ensure better long-term outcomes.

Prasanna Shirol, co-founder and board director of ORDI, emphasised the urgent need for faster policy implementation and sustainable funding at both the state and central levels.

“Health is a state subject, and we need greater involvement from state governments to ensure faster implementation of rare disease policies. Racefor7 has successfully brought together key stakeholders to push for change, and this year, we are focusing on building a unified voice through a multi-stakeholder approach to drive broader policy direction,” Shirol said.

The event also witnessed participation from healthcare leaders and industry representatives, who acknowledged the importance of raising awareness about early diagnosis and treatment accessibility.

Dr Monica Puri, Chief Country Access and Policy Officer at Roche, lauded the Racefor7 initiative as a significant step toward ensuring no one is left behind. She emphasized the need for greater advocacy and improved healthcare access for rare disease patients.

Rahul Kamath, Chief Operating Officer at Roche, highlighted the increasing prevalence of rare diseases and stressed the need for public, clinical, and policy-level awareness. “ORDI has been a torchbearer in this movement, and Roche is privileged to partner in this initiative to enhance healthcare outcomes,” he said.

With the aim of driving policy-level impact, Racefor7 has invited Health Ministers and key stakeholders from various states to strengthen collaborations and broaden participation. The event seeks support from rare disease advocates, healthcare leaders, and policymakers to ensure long-term awareness and policy action. 

Police commissioner of Mangaluru released the T Shirt for the event