Bengaluru citizens take part in Race for 7

Organization for Rare Diseases India organised the awareness walk to address the challenges of rare disease community in the country.

Citizens of Bengaluru turned up in large numbers to take part in Race For 7, an awareness walk/ run organised by the Organization for Rare Diseases India (ORDI), a non-profit organisation committed to addressing the challenges of the rare disease community in the country. The event saw enthusiastic participation by many patients living with rare diseases alongside noted personalities such as para shuttler world champion Anand Kumar and yoga therapist Vishwabandhu Nagesh.

“I am really touched to see so many citizens come out to participate in Race for 7 and support the cause of rare disease patients. I had one family earlier, but now I have many,” said Prasanna Kumar B Shirol, Founder Director, ORDI and the father of Nidhi Shirol diagnosed with Pompe Disease which is a rare disease. “It means a lot to those who live with various rare diseases and their families to have your support. Hopefully, we will be able to bring about a greater level of awareness and changes in policy that will in turn result in a better understanding and timely treatment for the many rare diseases that exist.”

The 7000 meter run/ walk which symbolically represents the 7000 documented rare diseases was held to commemorate Rare Disease Day which falls at the end of February. 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. This year also saw Race For 7 being conducted on a smaller scale in Washington, US.

“We are committed to working with ORDI to create greater awareness about rare diseases in India. Given the large number of known rare diseases, we need more efforts in early diagnosis and treatment to help rare disease patients and their families lead a better quality of life,” said Naz Haji, Managing Director, India R&D Solutions, QuintilesIMS.

Post the event, participants were treated to an entertainment programme by rare disease patients and employees of QuintilesIMS. “I have two key messages for all of you,” said Amit Mookim, General Manager, South Asia QuintilesIMS.