The Organisation For Rare Diseases India (ORDI), an NGO committed to addressing the challenges
of rare diseases in India will conduct ‘Race for 7’, an awareness run in 13 cities, including
Bengaluru, to raise funds and educate people about rare diseases.
In the city, the event is organised on February 24 at St Joseph’s Indian School.
Race for 7, a first of its kind event for rare diseases in the world, symbolically represents 7,000 rare
diseases with 7,000 people running for 7 kilometres to represent the average number of years it
takes to diagnose a rare disease.
An estimated one in 20 Indians suers from a rare disease. Lack of awareness and information has
created challenges for patients and their caregivers, most importantly delayed diagnosis,
aordable and targeted care and treatment and access. The theme for Rare Disease Day 2019 is
‘Bridging health and social care’, focusing on the need to better coordinate aspects of care to
improve the lives of people living with a rare disease.
https://www.deccanherald.com/city/run-create-awareness-about-719173.html
