University of Jammu hosts 'Race for Rare' Marathon, Uniting 150+ Participants to Champion Awareness for 70 Million Indians Living with Rare Diseases

• The 7-kilometer event, part of ORDI’s Racefor7 campaign, marks a decade of advocacy, highlighting the urgent need for early diagnosis, affordable treatments, and inclusive healthcare policies for rare disease patients.

JAMMU: The University of Jammu came together to advocate for rare disease awareness by hosting the "Race for Rare," a 7-kilometer marathon and walkathon under the national Racefor7 campaign by the Organization for Rare Diseases in India (ORDI). The event saw the enthusiastic participation of over 150 students, faculty members, medical professionals, and advocates, all committed to raising awareness about the 70 million people in India living with rare diseases.

Organized by the Science Club (Utsaah) in collaboration with the Institute of Human Genetics, Department of Zoology, Department of Pediatrics (SMGS Hospital, GMC Jammu), Department of Journalism and Media Studies, and the Mission Program on Pediatric Rare Genetic Disorders, the event also marked the 10th anniversary of Racefor7. The 7-kilometer run/walk symbolized both the 7,000 known rare diseases and the 7-year average delay in receiving a diagnosis.

Prof. Neelu Rohmetra, Dean Research Studies, University of Jammu, inaugurated the event, calling it "a beacon of hope for underserved communities in Jammu." She emphasized the importance of educating society about rare diseases that often run in families. Prof. Prakash C. Antahal, Chairperson of Utsaah and Dean of Student Welfare, underscored the significance of interdisciplinary collaboration in raising awareness and extending the campaign to remote areas.

Dr. Neeraj Sharma, Registrar, commended the initiative, highlighting that rare diseases often receive little attention in public health. He noted that such events play a vital role in raising awareness, uniting communities, and pushing for policies that ensure accessible healthcare and early diagnosis for those in need. Prof. Garima Gupta, Head, DJMS emphasized how such events unite the people for a vital health cause.

Several medical experts, including Dr. Sanjeev Digra (Department of Pediatrics, SMGS Hospital), Dr. Parvinder Kumar (Institute of Human Genetics & Department of Zoology), and Dr. Ravindar K. Gupta (HOD, Pediatrics, ASCOMS), spoke about the latest advancements in genetic research, diagnosis, and treatment options for rare diseases. Other distinguished attendees included Dr. Vikram Sahi (Library Sciences), Dr. Amit Gupta (Zoology), Dr. Shashpal (Zoology), and Dr. Rajesh Sharma (Buddhist Studies)

The event was not just about the marathon—it was a celebration of resilience and community spirit. Participants warmed up with a Zumba session, and after crossing the finish line, a flash mob kept the energy high. Every participant received T-shirts, medals, and e-certificates as a token of appreciation for their commitment to the cause.

Student coordinators and scholars, including Dr. Mohd. Younis (Organizing Secretary), Ms. Nikita Mahajan, Ms. Prajwala, Ms. Harsha, Ms. Gagandeep Kour, Ms. Manvi, Ms. Priya, Ms. Rashmi, Ms. Pakshita, Mr. Sahil, Mr. Nalin, Mr. Narinder, Sakshi Sawhney, and Er. Shubham Kotwal (Media Coordinators), played a crucial role in making the event a success.

Rare diseases affect over 70 million Indians, yet only 450 conditions are officially recognized. Shockingly, 30% of affected children do not survive beyond age 5, and treatments exist for less than 5% of rare diseases, often costing lakhs annually.

The event called upon policymakers to prioritize affordable treatments, neonatal screening, and inclusive healthcare policies. Dr. Chinmoyee Maharana, Science Club Coordinator and Assistant Professor in the Department of Zoology, emphasized that "awareness is the first step toward justice for rare disease patients." She also shared plans to expand the campaign across Jammu to support affected families.