Organization for Rare Diseases India (ORDI), a national patient advocacy organization committed to addressing challenges faced by people with rare diseases in India, hosted the 11th edition of its flagship annual awareness marathon, Racefor7. Here Karnataka health minister, Dinesh Gundu Rao who flagged off the event, extended strong support to the rare diseases community.
Minister Rao announced that the Karnataka State Rare Diseases Policy will be released shortly, assuring families that the government is committed to ensuring that no rare disease patient is left out.
Racefor7, led by ORDI, is a nationwide awareness movement advocating for early diagnosis, equitable access to treatment, and sustainable long-term care for individuals living with rare diseases. The minister’s assurance marks a significant step forward for Karnataka’s Rare Disease ecosystem and brings renewed hope to patients and caregivers across the state, said Prasanna Shirol, co-founder and executive director, ORDI.
“Since 2016, Racefor7 has been a people’s movement dedicated to amplifying the voices of individuals and families affected by rare diseases. Each year, this platform reinforces the urgent need for early diagnosis, equitable access to treatment, comprehensive long-term care, and sustainable policy frameworks that translate intent into real impact on the ground, he added.
The rare disease community now looks forward to a time-bound, inclusive, and well-resourced policy that ensures seamless access to diagnosis, treatment, supportive care, and financial protection. This is a critical opportunity for Karnataka to set a national benchmark in rare disease care — and ORDI stands ready to collaborate with the government to ensure effective implementation that truly transforms patient lives,” said Shirol.
The theme for this year’s awareness run, ‘Run for Rare for Lasting Care’, underscored the collective responsibility of patients, caregivers, healthcare professionals, policymakers, and the public in building a more inclusive and supportive ecosystem for the rare disease community. The Bengaluru event commenced with the 10K Timed Run flagged off, by Dr Sunil Bhat, Hematologist Narayana Health followed by the 7K Regular Run/Walk across India.
Dr Meenakshi Bhat, director, Centre for Human Genetics said, “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 research, in policy, funding, and patient support. Initiatives like Racefor7 remind us that awareness is the first step, but advocacy and innovation must follow.”
To date, ORDI has been a lifeline for over 15,000 rare disease fighters, providing sustained advocacy, guidance, and a supportive ecosystem to help patients and families navigate the complex medical, social, and financial challenges associated with these conditions.
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