Rare disease marathon
Courtesy: New Indian Express

4000 Run In 200 Cities For Rare Disease Awareness

According to ICMR, a disease or disorder is defined as rare in India if it affects fewer than 1 in 2,500 people

March 1, 2021

With the aim to raise awareness on 7,000 rare diseases in the world and 70 million rare disease patients in India, Racefor7- the annual marathon, was flagged off  on February 28 by para-athlete and Limca Record holder KY Venkatesh

The marathon, which was held virtually, was organised by the Organisation for Rare Diseases India (ORDI) and over 4,000 participants from across 200 Indian cities participated in it.

Apart from a host of rare disease patients and other volunteers, popular film actor Shweta Prasad also took part in the event.

According to ICMR, a disease or disorder is defined as rare in India if it affects fewer than 1 in 2,500 people.

“There are more than 7,000 rare diseases, of which only some are invisible, making it a challenge for early diagnosis and for the family dealing with it," reported newindianexpress.com quoting Dr Meenakshi Bhat, a clinical geneticist at the Centre for Human Genetics in Bengaluru.

It may be mentioned here that India has the world’s third-highest rare disease population and 70 per cent of rare diseases start during childhood and 30 per cent of the patients die before they become 5-year-old.

Moreover, less than 5 per cent of rare diseases have an available treatment and most of them are unaffordable.

The necessity to raise awareness against rare disease in India has been felt because most of the patients are stigmatised and this makes the life of a rare disease patient miserable.

"Changing the scenario of the rare disease community in India is certainly not a one-day task,” ORDI said in a statement.

ORDI founder-director Prasanna Shirol said that a lot has to be done in raising awareness regarding rare diseases in India and hopes that 2021 will witness the implementation of a policy for rare diseases and orphan drugs.

"Orphan drugs are developed to treat rare medical conditions, which, owing to fewer numbers, would not be profitable to make without government assistance," reported newindianexpress.com.

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