1 in 20 suffer from rare disease: ORDI

Chennai: When Chennai-based Zoyed Mohamed Zia was diagnosed of unknown type of ataxia (neurological disorder) when he was in class nine, little did he know that it was a rare disease that could lead to noncoordination of limbs, slurred speech and sluggish eye movements.

Fast forward 10 years, now he is an assistant professor in the Department of Zoology at New College. Though it was a late diagnosis, he is battling with the condition every single day.

Addressing a press conference here Wednesday, Organization for Rare Diseases India (ORDI) founder-director, Prasanna Shirol, said, “One in 20 Indians suffer from a rare disease, this is due to lack of awareness and information. Half of the affected patients are children, an important fact that often does not get highlighted. Besides lack of access to early intervention and treatment because of the lack of widespread awareness about rare diseases, the cost of treatment available is often expensive.”

To create awareness and raise funds for the same, ORDI, sponsored by IQVIA, is organising Race for 7, a multi-city run/walk representing 7,000 people with rare diseases for seven kilometers to show the average number of years it takes to diagnose the disease. In Chennai, it is being held on 24 February at 6.30 am at Olcott School, Besant Nagar.

For registration, visit registration.racefor7.com/

NT Bureau