Volunteers race to create awareness on rare diseases

Volunteers raise awareness for rare diseases in India through 'Racefor7' event organized by ORDI in Mysuru.

Scores of volunteers took part in the ‘Racefor7’ event conducted on Sunday to create public awareness on rare diseases which has afflicted 70 million people in India alone.

An initiative of the Organisation for Rare Diseases India (ORDI), the organisers said that though called rare diseases, the numbers are high in India given the sheer population levels and genetic factors. While worldwide nearly 350 million people were said to be afflicted by rare diseases, about 70 million were in India alone, they added.

Though there are 7000 diseases classified as rare, medicines were available only for a few, according to medical professionals taking part in the event. They said that in cases where it was available, the cost was prohibitive. Hence it made sense to follow the dictum of prevention was better than cure, and the Racefor7 was an effort to create public awareness about them.

The ORDI’s Racefor7 was held in 15 cities across India and in Mysuru it was flagged off from the Balarama Gate of the Palace. A few of the doctors who spoke before the race was flagged off, said that rare diseases have become an issue of public health and concern and hence one could no longer be quiet about it and instead had to do something about it the first of which was to create awareness.

This, according to medical professionals, was important as it would help in early detection and preventing it from aggravating. Besides, it is also an effort to bring doctors, patients and their caretakers together in a bid to connect with each other and empower the patients through information and resources.