4,000 run for rare disease awareness in 200 cities

BENGALURU : To raise awareness on 7,000 odd rare diseases in the world and 70 million rare disease patients in India, Racefor7 — an annual marathon by Organisation for Rare Diseases India (ORDI) was flagged off by para-athlete and Limca Record holder K Y Venkatesh, in Bengaluru on Sunday.

The event was held virtually, uniting over 4,000 participants from 200 cities across the country, to raise their voices for the rare disease community. Kannada film actress Shweta Prasad was also present on the occasion.  According to ICMR, a disease or disorder is defined as rare in India if it affects fewer than 1 in 2,500 people.

One of the participants, Dr Meenakshi Bhat, a clinical geneticist at the Centre for Human Genetics in the city, said, “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.” As per the press note, India has the world’s third-highest rare disease population.

While 70 percent of rare diseases start during childhood, 30 percent of the patients die before the age of five. Less than five percent of rare diseases have available treatment, but most of them are unaffordable.
“In India, the primary challenge is the lack of awareness about rare diseases. Moreover, the stigma attached to it makes it impossible for rare disease patients to lead lives of dignity.

Changing the scenario of the rare disease community in India is certainly not a one-day task,” ORDI said in a statement. Prasanna Shirol, Founder Director of ORDI said more needs to be done, most importantly in terms of a policy for rare diseases and orphan drugs, which he hopes to see implemented in 2021. Orphan drugs are developed to treat rare medical conditions, which, owing to less numbers, would not be profitable to make without government assistance.