Race poster.
Credit: X/@ORDIndia
Bengaluru: The Organization for Rare Diseases India (ORDI) on Wednesday announced the 10th edition of its annual awareness run, Race for 7, which will take place across 21 cities, including Bengaluru, on Sunday.
The event aims to raise awareness about 7,000 known rare diseases, with over 7,000 participants running seven kilometres in solidarity.
At the launch event, ORDI unveiled the national poster themed, "For Rare, Everywhere".
Interested participants can register at https://registration.racefor7.com.
The initiative seeks to drive policy-level decisions and improve access to treatment, as nearly 95 per cent of known rare diseases remain untreatable and require lifelong supportive care, according to ORDI.
"There is an urgent need for greater awareness, better policy implementation, and sustainable funding support systems for rare disease patients in India… We are working towards building a unified voice through a multi-stakeholder approach for broader policy direction,” said Prasanna Shirol, co-founder, and board director of ORDI.
Dr Meenakshi Bhat, clinical geneticist at the Centre for Human Genetics, Bengaluru, who attended the launch alongside rare disease patients and caregivers, stressed the importance of sustainable funding under the national policy, which currently provides up to Rs 50 lakh for treatment.
“In the 10th year of Race for 7, our goal is to reach more families affected by rare diseases, create awareness about treatment options, and ensure early enrolment for the best outcomes. We also hope the government will facilitate sustained, continuous definitive treatment as well as supportive therapy for eligible patients,” she said.