NEW DELHI: Around 70 million people in India suffer from “life threatening” rare diseases, a clinical research body said.
Indian Society for Clinical Research (ISCR) said there are close to 7,000 known rare diseases ay present most of which are “progressive, life-threatening and chronically debilitating conditions.
“There is no treatment for more than 90 per cent of these diseases and the number of patients with rare diseases continues to increase every year. The vast majority of rare diseases are genetically inherited and exist over the lifetime of a patient,” it said.
“Approximately, 50 per cent of those affected by rare diseases are children, of whom around 30 per cent will not live to see their fifth birthday. On an average, it takes around seven years to diagnose a rare disease,” ISCR said.
“In India alone, there are an estimated 70 million patients living with a rare disease, many of whom do not know they have a rare disease and even when they do, they either have no access to treatment or cannot afford it,” it said.
The last day of February is observed as ‘Rare Disease Day’.
“It is ironic that rare diseases are no longer a rare occurrence. Although we have made tremendous progress in science and medicine, very little has been invested in India in understanding rare diseases and their management.
“We need a more concerted effort to promote clinical research in India to find newer, affordable and effective therapies for the 70+ million patients in India who suffer from a rare disease and have an equal right to benefit from new medicines and treatment,” said Suneela Thatte, President ISCR.
Prasanna Shirol, Founder Member, Organisation for Rare Disease India (ORDI) said that awareness, accessibility and affordability are key needs of patients suffering from rare disease and early diagnosis is a critical challenge in the management of rare diseases.