The Organization for Rare Diseases India (ORDI), committed to addressing the challenges of the rare disease community in the country, today announced the 2017 Race for 7. Launched in 2016, Race for 7 is a 7,000 meter run/walk to raise awareness for the 7,000 documented rare diseases and the intent is to target 7,000 participants, each to represent one of the seven thousand rare diseases. The event will be held on February 26, 2017, to commemorate Rare Disease Day which falls at the end of the month.

Race for 7 will be flagged off at 7.00 am on Sunday, February 26th at St Joseph’s Indian High School. Participating in the event will be the public of Bengaluru and  patients from across the State.
 
“Rare diseases are not really as rare as we think there are. It is estimated that there are 70 million rare disease patients in India and one out of every 20 Indians suffer from a rare disease. Through Race for 7, we want to amplify the voice of rare disease patients so that there is greater awareness created about the needs and challenges of the rare disease community. We invite the public of Bengaluru to come out in large numbers to share their support for rare disease patients and their caregivers,” said Prasanna Shirol, founder member, ORDI and father of a patient with a rare disease.
 
The biggest challenge rare disease patients face is diagnosis, treatment and access to affordable care. It takes on an average seven years for a rare disease to be diagnosed. “Eighty percent of rare diseases are genetic in origin while the rest is the result of infections of bacterial or viral, allergies and environmental causes. Fifty percent of patients are children who rarely make it past their fifth birthday due to their illness and resultant complications” said Dr Meenakshi Bhat, Consultant in Clinical Genetics, Centre for Human Genetics.
 
The theme for this year’s Rare Disease Day is Research with the slogan With Research Possibilities are Endless to highlight the importance of research into rare diseases. “The lack of available treatments  leave these  patients and their families searching for new options and new hope. More research in rare diseases will help speed treatments to market and transform the lives of patients and their families,” said Dr Anita Patwari, Medical Director, Quintiles-IMS, sponsors of Race for 7. The company has provided clinical services for more than 245 rare disease studies in 96 countries since 2011.