Race for 7 is held in the month of February to commemorate World Rare Disease Day which falls on the last day of February. The theme for Rare Disease Day2019 is ‘Bridging health and social care’, focusing on the need to better coordinate all aspects of care to improve the lives of people living with a rare disease. What started as an awareness walk to commemorate World Rare Disease Day in February 2016 has now grown into a significant campaign, conducted simultaneously in multiple cities and two countries – India and the USA. Over the years, the run has expanded and in 2019it will be conducted over February and March across 13 Indian cities – Bengaluru, Mysuru, Chennai, Kolkata, Mumbai, Jaipur, Coimbatore, Bikaner, Hyderabad, New Delhi, Ahmedabad, Thiruvananthapuram, Kochi.
Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient, says: “One in every 20 Indians suffers from a rare disease. almost half of whom are children, an important fact that often doesn’t get highlighted. Besides lack of access to early intervention and treatment because of the lack of widespread awareness about rare diseases, the cost of treatment where available is often prohibitively expensive.We urgently need national and state policies that address the unique requirements of the rare disease community and enable them to lead lives of dignity and self-worth. We also need institutions like corporates and schools and colleges to create a more inclusive environment for rare disease patients.”
“IQVIA is delighted to be associated for the fourth consecutive year as the main sponsor of Race for 7, an event that has been growing in stature and impact. While rare diseases, by virtue of their definition, affect relatively fewer number of patients, the overall number of rare disease patients is large enough to warrant more focused attention. We hope that the public will come forward in large numbers to participate in Race for 7 and help amplify the voice of the rare disease community. Race for 7 is a unique way of engaging the community with those who matter most –patients and their caregivers – for a common cause,” said Amit Mookim, Managing Director, IQVIA – South Asia. Rare Diseases is a key therapeutic focus for IQVIA who has provided clinical services for more than 258 rare disease studies in 87 countries worldwide since 2011.
Prasanna added the importance of having a rare disease policy and an Orphan drugPolicy for holistic management of Rare Diseasesfor patients, in absence of any health care policy /insurance coverage and to support the Industry to develop newer drugs and research respectively.
