AIIMS Director Prof, M Srinivas flags off 8th Edition of Racefor7

by Priya Jadhav

New Delhi, March, 2023: The Organization for Rare Diseases India (ORDI) hosted its eighth edition of Racefor7® on the Sunday to raise awareness about the rare diseases in India. The event was flagged off by AIIMS Director Prof, M Srinivas, Chief Guest flagged off the event along with medical doctors from AIIMS and other hospitals. Participants joined the run/walk/bicycle to support the rare diseases cause at AIIMS campus.

Team ORDI works to connect rare disease patients, policy makers, medical fraternity, and Health Care Industry through various initiatives to sensitize the public at large to acknowledge rare diseases. A major initiative in this regard is our Annual Awareness Run –RACEFOR7. Race for 7 is an awareness run organized by Organization for Rare Disease India (ORDI) in line with World Rare Diseases Day. Racefor7 symbolically represents the 7000 rare diseases.

Every year ORDI organizes Racefor7®, the largest and longest rare disease awareness campaign in India with the support from various Patient Support Groups, Clinical Research, Pharmaceutical, Diagnostic Support Companies, Physicians, Hospitals, Volunteers and Runners with an objective to raise awareness among Public, Health Care Providers, Policymakers, Patient Organizations and other stakeholders. As part of Racefor7, short marathons/walk/bicycle of approx. 7 KM are organized across multiple cities in India spread across February and March significantly boosts awareness and education on the rare diseases.

Dr Madhulika Kabra and Dr Neerja Gupta on behalf of the Division of Genetics, Department of Paediatrics, AIIMS New Delhi comments, “Awareness about Rare diseases and their challenges among general public is important along with other stakeholders like the medical fraternity, government, Industry, media etc. It is heartening to know that awareness is increasing globally, and In India. Events like ORDI- Race for 7 shall make a huge impact that has brought multiple stakeholders together. We at AIIMS feel privileged for hosting this event and thank ORDI for giving us this opportunity and shall be happy to collaborate with ORDI to host this event in future. Our special thanks to all the participants for joining the event and expressing their solidarity to Rare disease patients and caregivers. Declaration and implementation of the rare disease policy by the Government of India is a major step, helping many families with better management of affected individuals. Specific treatment is presently available for about 5% of disorders, treatment being prohibitively expensive for most patients. There is a need to focus on research in the area for therapeutics for rare diseases and drug development in India.”

Speaking about the event, Mr Prasanna Kumar Shirol, Co-founder and Executive Director of ORDI, he, said “It is inspiring to see so many people come out to support the cause of rare diseases. The Rare Diseases community extends its heartfelt appreciation to all the participants.”

“Racefor7 is conceptualized and developed to raise awareness and build an annual Program to engage all the stakeholders concerned with Rare and Genetic Disorders.

The 8th Edition focuses on access to treatments and building quality of life for 70 million people affected with Rare Diseases.”

Further, he thanked Government of India and the State Governments for initiating treatments for Rare Diseases patients under National Policy for Rare Diseases, 2021 at the Government Hospitals. He said, “120 patients are getting treated in the first phase and there is long way to go in this journey of treatment, clinical trials, drug discovery and drug development, Insurance, find funding for both medical and non-medical support, continuous therapies, special education, care giving and building Quality of Life for patients and families suffering from Rare Diseases”  

All participants received a Tee Shirt with Bib mentioning a Rare Diseases Name. In addition, a medal and e-certificate were given to the participants along with sumptuous breakfast

About ORDI:

ORDI founded in Feb 2014, setup as a section 25 non-profit company in India is a patient-centered organization with the mission to improve health of patients with rare diseases around India through awareness, advocacy, collaborations and information dissemination.

ORDI represents the collective voice of all patients with rare diseases in India to effect government policy making. ORDI has identified the grand challenges faced by rare diseases community in India and is committed to systematically and holistically address these challenges. Our approach is to engage with key opinion leaders and rare disease experts nationally and internationally to design and implement innovative programs for the benefit of stakeholders in India.