ORDI to seek support from the Stakeholders to raise awareness for Rare Diseases Patients

Hyderabad: 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 Dr Thangaraj, Director- Centre for DNA Fingerprinting and Diagnostics. Participants joined the run/walk/bicycle to support the rare diseases cause.

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 Ashwin Dalal, HoD Diagnostics Division, Centre for DNA Fingerprinting and Diagnostics stated

“Attended the Race for 7 event today in Hyderabad. It was heartening to see more than 350 participants in spite of this being the first run event from ORDI in the city and eminent rains. Hope the awareness regarding rare diseases spreads to all corners of the country”

Speaking at the inauguration, Dr Lokesh Lingappa, renowned Neurologist comments, “Rare disease parent support group now form the back bone and also voice of these families. We have come a long way in last one decade in terms of diagnosis, supportive care and curative treatment being available for 5% of these conditions. This is now being taken seriously addressed with establishment of center of excellence. Rest of them need appropriate symptomatic treatment where we have long way to go is cohesive movement forward with all the stake holders being working on same platform with different verticals. We need to invest in research to go the distance and reduce cost of many of these medications if we start innovating. This too shall happen. We need the mindset, Government support and community involvement.”

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”.