Jammu University comes together for Rare Disease Awareness with Racefor7

150+ Participants Join National ORDI Campaign to Support 70 Million Rare Disease Patients 

 Jammu, 23 Feb: The University of Jammu hosted the “Race for Rare”, a 7-kilometer awareness marathon cum Walkathon, as a part of the Organization for Rare Diseases in India (ORDI)’s nationwide Racefor7 campaign. The event, held on the university campus, over 150 students, faculty, healthcare experts, and rare disease advocates united to spotlight the struggles of India’s 70 million rare disease patients. 

 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 Pediatrics Rare Genetic Disorders, the event marked ORDI’s 10th anniversary of Racefor7. Activities included a 7Km run/walk symbolizing the 7,000 known rare diseases and the 7-year average delay in diagnosis. 

Prof. Neelu Rohmetra, officiating Vice Chancellor and Dean Research Studies, the University of Jammu inaugurated the event, calling it a “Hope for underserved Communities in Jammu and the awareness can help the society to be aware for the rare diseases running in families.” 

Prof. Prakash.C. Antahal (Chairperson, Utsaah) and Dean Student Welfare stressed interdisciplinary collaboration and appreciated the road map for the rare disease awareness campaign to take place in various far-off places future. Dr. Neeraj Sharma, Registrar appreciated the cause. Prof. Garima Gupta (Coordinator Translation Club) and HoD Department of Journalism and Media Studies shared her views that such an event binds the Jammuites for a medical health cause keeping the notion to celebrate Jammburiyat for 2025 announced by Prof. Umesh Rai, Honorable Vice Chancellor; Dr Sanjeev Digra (Department of Pediatrics in S.M.G.S); Dr Parvinder Kumar (Deputy Coordinator Institute of Human Genetics and Assistant Professor in Department of Zoology; Dr Ravindar K. Gupta, HoD, Department of Pediatrics in ASCOMS collectively emphasized various clinical and diagnostic aspects for rare disease and specially highlighted advancements in genetic research in the field. Other dignitaries present during the event were Dr Vikram Sahi, I/C Director, Library Sciences, Dr Amit Gupta (Zoology), Dr Shashpal (Zoology), and Dr Rajesh Sharma (Dept. of Buddhist Studies).

Scholars and student Coordinators Dr Mohd.Younis (Organiser Secratary), 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) and many others.

Participants received T-shirts, medals, and e-certificates. Highlights also included a Zumba session before marathon and a flashmob afterwards and heartfelt interactions among participants. 

Why It Matters?  Over 70 million Indians live with rare diseases, yet only 450 conditions are officially recognized.  30% of patients die before age 5, and treatments exist for less than 5% of diseases, often costing lakhs annually. 

The event urged policymakers to prioritize affordable therapies, neonatal screening, and inclusive healthcare policies. 

Dr. Chinmoyee Maharana, Science Club, Coordinator and, Assistant Professor in Zoology Dept, said, “Jammu’s participation proves awareness is the first step toward justice for rare disease patients. She also shared the roadmap to take this campaign further in length and breadth of Jammu to reach patients and, affected families”.

Everyone applauded the cause and whole-heartedly took part in the marathon for this noble cause making it a grand success.