'Race for 7' held to spread awareness on rare diseases treatment

CHENNAI: In order to spread awareness on the incidence of rare diseases and the need to provide medical care for these patients, "Race for 7" in was conducted by Organization for Rare Diseases India (ORDI) at Island Grounds in collaboration with various disability groups on Sunday.

Meghanath Reddy, Secretary of Sports Development Authority of Tamil Nadu flagged off the run and awarded medals to the winners among runners, cyclists, walkers, wheelchair runners and adapted scooter riders with disabilities. While addressing the participants, he said that all possible support will be given to those who are suffering from rare diseases by the government.

Race for 7 with the tagline 'Care for Rare' plans to create awareness on 7,000 rare diseases with 7,000 people running for 7 km to symbolically indicate that it takes about seven years on an average to diagnose a rare disease. Dr Pradeep Kumar, consultant Genticist said that there is a need to voice the rights of people with rare diseases - roar for rare, until effective policy benefits reach people with rare diseases.

Several other doctors and pharma companies representatives mentioned the need for early screening and timely treatment for all. They also emphasized on stem cell donation and bone marrow transplant as they are highly helpful in treating several rare diseases but because of inadequate donors, many patients lose the battle against rare diseases.