Jammu varsity hosts marathon to raise awareness on rare diseases

The University of Jammu organised the “Race for Rare,” a seven kilometre marathon and walkathon, as part of the national Racefor7 campaign by the Organisation for Rare Diseases in India (ORDI). The event aimed to raise awareness about the 70 million people in India living with rare diseases.

Over 150 students, faculty members, medical professionals and advocates participated in the event, which was organised by the Science Club (Utsaah) in collaboration with the Institute of Human Genetics, the Department of Zoology, the Department of Pediatrics (SMGS Hospital, GMC Jammu), the Department of Journalism and Media Studies and the Mission Program on Pediatric Rare Genetic Disorders. The event also marked the tenth anniversary of Racefor7. The seven kilometre run symbolised the 7,000 known rare diseases and the seven-year average delay in diagnosis.

Prof Neelu Rohmetra, dean of Research Studies at the University of Jammu, inaugurated the event, calling it “a beacon of hope for underserved communities in Jammu.” She emphasised the importance of educating society about rare diseases, many of which run in families.

Prof Prakash C. Antahal, chairperson of Utsaah and dean of student welfare, highlighted the significance of interdisciplinary collaboration to raise awareness and extend the campaign to remote areas.

Dr Neeraj Sharma, registrar of the university, praised the initiative, noting that rare diseases often receive minimal attention in public health. He stated that events like these are crucial in raising awareness, uniting communities and advocating for policies that ensure accessible healthcare and early diagnosis for those in need.

The event called on policymakers to prioritise affordable treatments, neonatal screening and inclusive healthcare policies.