The Organization For Rare Diseases India (ORDI), a not for profit organization dedicated to addressing the challenges of the rare disease community in India, announced ‘Race for 7,’ a multi-city run/walk to raise funds and awareness for rare disease patients in India. This first of its kind event for rare diseases in the world is representative of 7000 rare diseases with 7000 people running for 7 kilometers to suggest the average number of years it takes to diagnose a rare disease. One in 20 Indians is estimated to suffer from a rare disease. Lack of awareness has given rise to numerous challenges for patients and their caregivers.

In addition to general public, several rare disease patients and their families will participate in the Race for 7 in order to highlight the challenges faced by them and the need for governments and other institutions to acknowledge their unique needs and create suitable policies and a more supportive environment for them.

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 Day 2019 is ‘Bridging health and social care’. It emphasizes on the need to better coordinate all aspects of care to improve the lives of people with rare diseases. It began as an awareness walk to commemorate World Rare Disease Day in February 2016 and has now grown into a major campaign, conducted simultaneously in multiple cities and two countries – India and the USA. The run has expanded over time and in 2019, it will be conducted over February and March across 13 Indian cities, including Bengaluru, Mysuru, Chennai, Kolkata, Mumbai, Jaipur, Coimbatore, Bikaner, Hyderabad, New Delhi, Ahmedabad, Thiruvananthapuram, and Kochi.

Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient said that 1 in every 20 Indians suffers from a rare disease and nearly half of these are children. Besides lack of access to early intervention owing to a lack of awareness about rare diseases, the cost of treatment is often very high. National and state policies are urgently needed to address the requirements of the rare disease community and enable them to lead lives of dignity and self-worth. There is a need for institutions like corporates and schools and colleges to create a more inclusive environment for patients with rare diseases. He added on the significance of having a rare disease policy and an Orphan Drug Policy for comprehensive management of rare diseases, in absence of any health care policy/insurance coverage and to support the industry to develop newer drugs and research.

Amit Mookim, Managing Director, IQVIA, South Asia stated that IQVIA was delighted to be associated for the fourth consecutive year as the main sponsor of Race for 7. He added that although rare diseases, by virtue of their definition, affect relatively fewer patients, the overall number of rare disease patients is large enough to call for more focused attention. He said that they hoped that people will come forward in large numbers to participate in Race for 7 and help in intensifying the voice of the rare disease community.