A survey says one in 20 Indians are affected by a rare disease

Bangalore, February 18: 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. These diseases include Haemophilia, Thalassemia, Sickle-cell Anaemia and Primary Immuno Deficiency in children, auto-immune diseases, etc.

The Organization For Rare Diseases India (ORDI), committed to addressing the challenges of the rare disease community in India

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.”

Race for 7, a first of its kind event for rare diseases in the world, symbolically represents 7000 rare diseases with 7000 people running for 7 kilometers to represent the average number of years it takes to diagnose a rare disease. Although an estimated 1 in 20 Indians suffers from a rare disease, lack of awareness and information has created several challenges for patients and their caregivers, most importantly delayed diagnosis, affordable and targeted care and treatment and access. Besides members of the general public, several rare disease patients and their families will participate in Race for 7 to draw attention to the challenges they face and the need for governments and other institutions to recognize their unique needs and create enabling policies and a more supportive environment for them.