Awareness walk on rare diseases

Bengaluru: Over 3000 people gathered at the “Racefor7” awareness walk on Sunday by the Organisation for Rare Diseases India (ORDI). The 7-km walk was held to raise awareness about rare diseases and their treatments for the patients and caregivers. 

Starting at 7 am at the St Joseph’s Indian High School ground, the walk saw the presence of Kannada actor Ramesh Aravind and Prasanna Kumar Shirol, co-founder and executive director of ORDI among others. 

“Racefor7” is an annual awareness run organised to observe World Rare Diseases Day. The last day of February is marked as World Rare Diseases Day to help people and policymakers understand rare diseases and their impact on patients’ and caregivers’ lives. This year, the day falls on February 29. 

A press note released by ORDI said that there are more than 7,000 rare diseases reported worldwide with over 350 million people being affected by this. It also noted that one in twenty Indians is affected by one of the rare diseases. 

Further, about 80% of rare diseases are genetic in origin and 50% of these are onset at birth while the rest start showing symptoms later. Rare diseases include inherited cancers, autoimmune disorders, congenital malformations, and many infectious diseases. A majority of the diseases have no treatment, and the existing treatments are mostly unaffordable. Early diagnosis is critical; however, it often takes nearly 7 years to diagnose a rare disease.