Bengaluru: The Organisation for Rare Diseases India (ORDI), a patient-centered non-profit organisation, will be organising ‘Race for 7’ in the city on February 28 to highlight the needs of rare disease patients in the country. The 7-km run would be flagged off at St. Joseph’s Indian High School and will target 7,000 people, to symbolically represent 7,000 documented rare diseases.
“It is ironic that while the number of patients with rare diseases is increasing every year, there is no treatment for more than 90% of the diseases and patients can, at best, depend only on supportive therapy. Awareness, accessibility and affordability are key needs of patients suffering from these diseases," said Prasanna Kumar B. Shirol, Founder Director, ORDI and the father of a young teenager with a rare disease.
Dr Meenakshi Bhatt, Consultant Clinical Genetics — CHG (Centre for Human Genetics) said, “A rare disease is often referred to as an ‘orphan disease’, since the condition is not likely to be researched or studied, therefore making treatment of the condition much more difficult. With limited or no access to proper diagnosis, medical treatment or cure, mortality rate among patients suffering from rare diseases is high.”
“We must remember that rare disease is no longer a ‘rare’ occurrence. Globally, 350 million people are living with a rare disease,” said D. Vikas Sharma, Chief Medical Officer, India and Senior Director, Medical Ethics and Research, Quintiles, the key sponsors for ‘Race for 7’.
