BENGALURU: Racefor7, a multi-city run/walk, will be held in 20 cities, including Bengaluru to raise awareness on rare diseases. The event will focus on patients who struggle without treatment options for rare diseases, lack of affordability and access to healthcare.The Organization for Rare Diseases India is organising the run with help from IQVIA, an American multinational company involved in health information technology and clinical research. In Karnataka, the run will take place in Mysuru on March 8 and Davangere on February 29. There will be similar events in Ahmedabad, Chennai, Coimbatore, Delhi, Hyderabad, Indore, Mumbai and other places.
Out of 7,000 kinds of rare diseases in the country, only 5 per cent are treatable. ORDI co-founder and executive director Prasanna Shirol whose daughter Nidhi is suffering from Pompe disorder which damages muscle and nerve cells, said, “Treatment is expensive and there is little support from the government. There is a case going on in the High Court for the same, but the central government refuses to pay a part of the treatment cost with the state.
We get two calls everyday at the Rare Disease Helpline from people who have not been able to get a diagnosis or who have got a diagnosis and don’t know what to do or those seeking funds for treatment”. This year’s race at St Joseph’s Indian High School at 6.30 am is to commemorate the World Rare Disease Day, he said.