CHENNAI: A disease is typically considered rare when approximately one in 5,000 people are diagnosed with it. The Indian population of 133.92 crore is exposed to 450 communicable and inherited rare diseases. According to the Organisation for Rare Disease India (ORDI), seven crore people in the country suffer from rare diseases. In a press conference, which was held on Thursday ahead of World Rare Disease Day (February 29), the ORDI announced Racefor7, a seven- km run/walk which will be organised on March 1 at 6.30 am from Olcott School, Adyar, to spread awareness about such rare diseases.
The organisation works towards bridging the gap between the availability of treatment and the demographic and economic situation of people. “Last year, our proposal to provide enzyme transplants to patients suffering from rare diseases, free of cost, was approved by the government. A lifelong procedure that normally costs `40,000 to ` 1 lakh, is being provided for free in pockets of Tamil Nadu,” said Dr S Suresh, director, MediScan. Topping the list of rare diseases are the set of 50 lysosomal disorders and multiple sclerosis. “Along with battling a rare disease, patients also face everyday illnesses like common cold and fever.
While diagnosing the issue and writing out a prescription, doctors have to keep in mind the condition of the rare disease in the patient,” said IM Zia, a caregiver to his son who suffers from a rare disorder. The sevenkm run, Racefor7, will also see caregivers participating along with family and friends. “Diagnosis of a rare disease takes close to seven years in some cases. It takes a specialist to identify a rare disease in a couple of days. We have called a set of specialists to identify and address the conditions of rare diseases at VHS Hospital in Taramani.
We hope to reach out further and provide correct treatment,” said Dr Suresh. Racefor7 will be held across 20 cities in India and seeks to draw attention to the need for government support in creating a rare disease policy in India to relax medical expenses for those diagnosed with rare diseases.
For details, call: 9036099316. Register at: registration. racefor7.com/