Novo Nordisk India partners with ORDI to champion rare disease advocacy with the 11th edition of Racefor7

New Delhi: Novo Nordisk India and the Organization for Rare Diseases in India (ORDI) partnered for the 11th edition of Racefor7 run in Bangalore. From patients and caregivers to clinicians, the event brought together diverse voices in a collective push for stronger healthcare access and support for people living with rare diseases in India.

The run was flagged off by Dinesh Gundu Rao, Health Minister of Karnataka and Prasanna Shirol, Co-founder and Executive Director – ORDI.

Emphasising the need for preventive treatment alternatives for Rare Disease Management in India, Vikrant Shrotriya – Managing Director, Novo Nordisk said, “Rare disease management in India demands a stronger focus on prevention and sustained care. Conditions like factor deficiency and growth hormone deficiency highlight an urgent need for greater awareness, timely diagnosis and consistent treatment pathways. At Novo Nordisk, we believe initiatives like Racefor7 play a vital role in sparking dialogue, inspiring innovation, and shaping policies that can deliver better outcomes for patients and families affected by rare disorders. Our commitment is to ensure that science and compassion come together to create a healthcare ecosystem where no patient feels left behind.”

Prasanna Shirol, Co-founder and Executive Director – ORDI, thanking the participants, said, “Since 2016, Racefor7 has been dedicated to raising awareness of rare diseases with a vision to empower patients and their families. Each year, we witness overwhelming support that amplifies patient voices and reinforces the critical importance of early diagnosis, timely access to treatment, and policies that enable better healthcare outcomes for individuals living with rare diseases”

RaceFor7 is an annual awareness run symbolising the 7,000+ known rare diseases, bringing together different groups of people walking or running for 7 kilometres to highlight challenges faced by the rare disease community. By highlighting the importance of early prophylaxis and comprehensive long-term care, the event reinforced how proactive management of rare diseases can significantly improve patient outcomes and quality of life.

India is home to an estimated 25% of the world’s people living with rare disease, underscoring the country’s significantly high burden of these conditions. Rare diseases continue to grow, with approximately 250 new rare diseases added each year to the existing 7,000 and nearly 80% of rare diseases have a genetic origin, with 50% affecting children; many of them tragically do not survive beyond the age of five. About 80% of rare diseases have some identified genetic origin, and 50% of them affect children.²

Highlighting the shift in India’s rare disease landscape, Dr Meenakshi Bhat, Director, Centre for Human Genetics, “India’s rare disease landscape is evolving, but the challenges remain immense. Over the past two decades, we have seen thousands of families struggle with delayed diagnosis, limited access to therapies, and the emotional toll of uncertainty. What is encouraging today is the growing recognition that rare diseases require sustained attention in policy, funding, and patient support. Initiatives like Racefor7 remind us that awareness is the first step, but advocacy and innovation must follow.”

The event concluded with a renewed commitment to continue advocating for policies and programmes that make healthcare more accessible for people living with rare diseases. Racefor7 has grown into a movement bridging gaps between patients, healthcare providers, and policymakers.