Leading Experts, Patients, and Caregivers across India unite to Raise Awareness for Rare Diseases
The Flagship Event of ORDI Celebrates Racefor7 for the 10th Successive Year
NATIONAL, February 19th, 2025: The Organization for Rare Diseases India (ORDI) today announced the 10th edition of its flagship annual awareness run, Racefor7. The event marked the official launch of this year’s National poster and theme, “For Rare, everywhere”, and reinforced ORDI’s commitment to amplify awareness, expedite treatment, and strengthen collaborations with Centers of Excellence (COEs) for Rare Diseases across India. This year, the event will be happening in 21 cities across India on the same time.
Dr. Meenakshi Bhat, a pioneering clinical geneticist at The Centre for Human Genetics in Bangalore, and a long-time supporter of the rare disease community was present alongside rare disease patients and caregivers. The event served as a platform for meaningful discussions on the implementation of the National Policy for Rare Diseases 2021 and emphasised on the need to provide sustainable funding for rare disease patients under the national policy. The experts deliberated upon centre and state-level engagement to facilitate necessary treatment for eligible patients across the country.
Speaking at the event, Dr. Meenakshi Bhat, said, “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 the “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 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”
Racefor7 has evolved into a PAN India event, symbolizing the 7,000 known rare diseases with over 7,000 participants running 7 kilometers. Since its inception in 2016 in Bengaluru, the initiative has grown significantly, with over 10,000 participants expected to take part across multiple cities in this edition on 23rd February.
Adding to the discussions, Prasanna Shirol, Co-founder and Board Director, Organization for Rare Diseases India (ORDI), emphasized the importance of continued advocacy for rare diseases and said, “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 being a State Subject. There is a dire need for faster implementation of policy and establish sustainable funding for treatment. We are working towards building unified voice through multi stakeholder approach for broader policy direction.”
Dr Monica Puri, Chief Country Access & Policy Officer, Roche, said, “I am humbled by the initiative and deeply appreciate the Racefor7 initiative. It is an incredible platform to raise awareness for rare diseases and support the cause of “leaving no one behind”. This event is not just about running or walking- it’s about showing solidarity with patients and families who battle these conditions every day. At Roche, we are proud to support ORDI’s mission and stand alongside the rare diseases community. Together, we can drive awareness, advocate for better healthcare access, and bring hope to those who need it the most.”
Rahul Kamath, Chief Operating Officer, Roche, The main sponsor to the event, said, “Rare diseases incidences are becoming increasingly prevalent, hence it’s imperative that social and clinical awareness is created for early diagnosis and better quality of life, amongst the public, practising Doctors as well as the healthcare decision makers. Kudos to ORDI for being the torchbearer towards this awareness drive. We, as Roche, feel privileged to partner with ORDI on this initiative and help create that vision for better care. We recognise that achieving optimal health is highly critical as well as possible from a care giving perspective. It’s time now to square off that therapeutic curve of healing!”
Racefor7 2025 aims to drive policy-level impact and enhance access to treatment across the country. Invitations is extended to Hon’ble Health Ministers and key stakeholders from different states to strengthen collaboration and ensure wider participation for the cause.
The event seeks strong support from rare disease advocates, healthcare leaders, and advocacy groups, underscoring the critical need for sustained awareness and policy action for rare diseases.
Racefor7 2025 is scheduled to take place on February 23, 2025. Registrations are open, and individuals from across India are encouraged to participate in support of the rare disease community.
Join the movement. Run for the 7000. Run for Rare. For registrations and more details about your city:
Please Visit: https://registration.racefor7.com
