About 7000 disorders with genetic background are found all around the world. Over 450 are recorded in India. Some among them can be managed at low costs while some of them need higher costs to manage the good health of the patients. To raise awareness about such rare disease patients in India, a multi city run/walk titled Racefor7 was announced.

The press meet was graced by Dr Dipanjana Datta, Dilip Singh, Pinaki Talukdar and Subhra Das.

This is the fifth edition of the run/walk. The walk represents 7000 rare diseases and the average of 7 years it takes to diagnose a rare disease. This is a one of its kind event for rare diseases in the world with 7000 people running or walking a length of 7 kilometers. In India, the run/walk will be held across 20 Indian cities namely Ahmedabad, Bengaluru, Kochi, Jaipur, Indore, Hyderabad, Pune, Delhi, Vellore and others.

The theme of the disease is Reframe Rare for Rare Disease Day with the message that “Rare is many, rare is strong and rare is proud”. In February 2016, ORDI organized the first Racefor7 in Bangalore to create awareness and find a collective voice for the rare disease community.

Speaking at the press meet, Dr Datta said that detection is very important to treat rare diseases. Management is the next step. And then parental information about the disease is vital.

There is no genetic screening in India and the work of the parental organisations therefore is of vital importance in the management of rare diseases.

For the genetic screening diagnosis, the range is between Rs 3000 to Rs 40000.

The State Government in West Bengal has taken the initiative to establish a task force committee for Rare Disease. Many eminent doctors have taken the initiative in spreading the awareness about the rare diseases.

For registration purposes, one can log on to http://registration.racefor7.com/

Priyanka Dutta